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Hi, when I first started taking the D3 Regimen it worked wonders for me (2016).
 
This time however, it doesn't seem to be working. I had dengue fever a few weeks ago and was VERY sick (lost between 10-14 lbs) and was also on antibiotics before that for a dental abscess. A few weeks after I've recovered from the Dengue....I started suffering from cluster headaches again. I started the D3 Regimen (2 week - 50,000 IU/day loading schedule) but now I'm at the end of the schedule the headaches still persists.
 
I'm wondering if maybe I have an absorption problem. When I initially started the regimen back in 2016, I used a sublingual D3 supplement. Now I'm using gel caps.
 
Is it safe for me to use the gel caps (50,000 IU) and then use D3 liquid (50,000 IU) in my orange juice as a general beverage? Is there a danger to me by upping the D3 dosage by this much for 1 week (100,000 IU D3/day) while taking all the other cofactor pills? I've also started taking benedryl today since my allergies are always bugging me and that might be a factor as well. I will try to have a D3 serum test done at the end of this month but I just want the pain to go away like the last time and I can't find thesublingual pills in store.
 
Hoping to hear from someone soon, thanks!
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Batch can reply better when it comes to D3 Regimen but if I were you, I would get a blood test done ASAP to know what your Vitamin D levels are. At any cost and right away. If you are already in the green zone, taking these may not help, if you are in the danger zone, taking these might be dangerous. I personally believe the cause of CH might at least partially be in the well being of the intestines so this might still have a lot to do with antibiotics you used and any kind of inflammation can also play a part. Meanwhile being gentle on your stomach might help to improve things although slowly. Do you have anything else as treatment for clusters ?

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On 11/25/2018 at 9:19 AM, Tony Only said:

Batch can reply better when it comes to D3 Regimen but if I were you, I would get a blood test done ASAP to know what your Vitamin D levels are. At any cost and right away. If you are already in the green zone, taking these may not help, if you are in the danger zone, taking these might be dangerous. I personally believe the cause of CH might at least partially be in the well being of the intestines so this might still have a lot to do with antibiotics you used and any kind of inflammation can also play a part. Meanwhile being gentle on your stomach might help to improve things although slowly. Do you have anything else as treatment for clusters ?

Thanks for the response Tony! I've spoken to Batch over email and he gave some suggestions to try, but other than what I've outlined above...I have nothing else to use.

I strongly believe that the  dose of Amoxicillin I was on 500mg three times a day for 5 days, then immediately after Dengue fever.....I think have messed with my body, my gut...something happened that triggered these CH again and is preventing this D3 Regimen from working....

I will fight through the pain, stop the regimen or at least only take the maintenance dose of 10k IU/day, get the test done ASAP, get a probiotic and depending on the test results make a decision while trying some of Batches other recommendations.

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Sounding good Seff. I have had to take several 10 day 2 antibiotics at the same time for h. pylori infection in my lifetime, those are especially brutal and wipe out a lot of the good bacteria as well. Almost every time clusters kick in after that. It's a slow recover day by day and any way you are able to support your gut to recover may help on the induced cluster as well. Keep us posted :)

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Antibiotics are a necessary evil when treating significant bacterial infections.   They do nothing for viral infections.  That's where a healthy immune system comes into play as that's how the body fights off viral infections.  Again, there are no pharmaceutical silver bullets for viral infections.

The best response to a course of antibiotics is to start at least a month long course of probiotics to rebuild and recolonize the friendly bacteria in the GI tract called the microbiome that were destroyed by antibiotics.  This is an important course of action as the majority of our immune system centers around the GI tract.  A healthy microbiome helps ensure a healthy immune system.  Vitamin D3 and Omega-3 fish oil also help build a healthy microbiome and immune system.

Take care,

V/R, Batch

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Hey Seff,

Regarding vitamin D3 loading doses...  I've been suggesting a total loading dose of 600,000 IU of vitamin D3 when starting with a low serum 25(OH)D concentration.  This total loading dose of vitamin D3 can be taken all at once (there are several studies where this was done in a single oral dose with no adverse reactions) or spread out over 2 to 4 weeks.  We've seen excellent results with the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days followed by a drop in vitamin D3 dose to an initial daily maintenance dose of 10,000 IU/day.

I've also suggested CHers discuss lab tests with their PCP/GP or neurologist for serum 25(OH)D, calcium and PTH (Parathyroid Hormone) after 30 days on this regimen.  25(OH)D is a poor indicator of vitamin D3 intoxication/toxicity.  Only serum calcium and PTH should be used here.  As long as serum calcium remains within its normal reference range and PTH is in the lower third of its normal reference range, there is no vitamin D3 intoxication/toxicity as evidenced by hypercalcemia (too much serum calcium).

For reference, I've maintained my serum 25(OH)D concentration up around 180 ng/mL (450 nmol/L) for at least two years.  In all that time my serum calcium remained within its normal reference range and PTH was low as expected.  My PCP had no problem with these results as there were no indications of vitamin D3 toxicity.

Take care and please keep us posted.

V/R, Batch

 

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7 hours ago, Batch said:

Hey Seff,

Regarding vitamin D3 loading doses...  I've been suggesting a total loading dose of 600,000 IU of vitamin D3 when starting with a low serum 25(OH)D concentration.  This total loading dose of vitamin D3 can be taken all at once (there are several studies where this was done in a single oral dose with no adverse reactions) or spread out over 2 to 4 weeks.  We've seen excellent results with the 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days followed by a drop in vitamin D3 dose to an initial daily maintenance dose of 10,000 IU/day.

I've also suggested CHers discuss lab tests with their PCP/GP or neurologist for serum 25(OH)D, calcium and PTH (Parathyroid Hormone) after 30 days on this regimen.  25(OH)D is a poor indicator of vitamin D3 intoxication/toxicity.  Only serum calcium and PTH should be used here.  As long as serum calcium remains within its normal reference range and PTH is in the lower third of its normal reference range, there is no vitamin D3 intoxication/toxicity as evidenced by hypercalcemia (too much serum calcium).

For reference, I've maintained my serum 25(OH)D concentration up around 180 ng/mL (450 nmol/L) for at least two years.  In all that time my serum calcium remained within its normal reference range and PTH was low as expected.  My PCP had no problem with these results as there were no indications of vitamin D3 toxicity.

Take care and please keep us posted.

V/R, Batch

 

Thanks again Batch, I went to the doc today and got 1 week of Prednisone to help with the pain and also introduced him to the Vitamin D3 Regimen. I also had the Vit D3 blood test done today and should get the results next week.

 

The 500mg Amoxicillin I was on was for a root canal right before I was diagnosed with the Dengue. I took your advice and got some Probiotics and Tumeric (Curcumin) - 1100 mg today as well so I started those today.

 

I also got some Superior Source Vitamin D3 (sublingual) today as well so I'll start either the 4 week loading schedule on Monday.

 

I will let you guys know how everything goes!

 

 

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15 hours ago, Tony Only said:

Sounding good Seff. I have had to take several 10 day 2 antibiotics at the same time for h. pylori infection in my lifetime, those are especially brutal and wipe out a lot of the good bacteria as well. Almost every time clusters kick in after that. It's a slow recover day by day and any way you are able to support your gut to recover may help on the induced cluster as well. Keep us posted :)

You are absolutely correct! I mean, I knew antibiotics killed good and bad bacteria in your gut but... I did not know before how important your gut was to your health and well-being!

If only I knew before what I know now, but that's life right :)

I'll keep you posted!

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Hey Seff,

You've taken the right course of action to prevent your CH.  I'm confident you'll be happy with  the results.

Please let us know the results of your 25(OH)D lab test.  My guess is your results will fall under the following normal distribution curve for baseline 25(OH)D test results from 257 CHers before start of regimen.

gjZTD2t.jpg

Take care,

V/R, Batch

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  • 2 weeks later...
On 12/1/2018 at 2:19 AM, Batch said:

Hey Seff,

You've taken the right course of action to prevent your CH.  I'm confident you'll be happy with  the results.

Please let us know the results of your 25(OH)D lab test.  My guess is your results will fall under the following normal distribution curve for baseline 25(OH)D test results from 257 CHers before start of regimen.

gjZTD2t.jpg

Take care,

V/R, Batch

Just wanted to share an update:

 

I love sublingual Vitamin D3:

When I last posted on Nov 29th (Thursday), my goal was to take the Prednisone I was prescribed and then restart the Vitamin D3 50,000IU loading schedule the following Monday, 3rd Dec....

 

 

However, that Thursday night after I posted I had a change of heart and decided to take the sublingual D3 I bought instead of the Prednisone and instead of waiting till Monday. I slept well that night and did not wake up the next day with an impending headache :) but in the afternoon I had a cluster headache that lasted about 10 mins with manageable pain. After that was a couple days with a foggy migraine like aura feeling in my head (like the cluster headache was there but not there)....I continued the Vitamin D3 sublingual and to this day the headache pain has gone away.

 

During this time the pain came back once (On Friday), but that was because I missed 2 days of the loading schedule (Wednesday and Thursday) but once I doubled up for those missed days the pain went away again.

 

I'll keep loading as I have 4 more days of the loading schedule left, but so far so good and I've managed to stay away from the Prednisone so that's a plus (Been reading and some people reported that their CH got worse after Prednisone use - this was mainly the reason for my apprehension)

 

Regarding the D3 test:

I haven't gotten the results as yet, but I'll call my PCP on Monday for an update.

 

(Update - I just received a call and the blood work is back so I'll visit tomorrow or Tuesday and update then)

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Hey Seff,

Thank you for the update.  It appears you're responding nicely to the vitamin D3 loading schedule... Good on you for skipping the prednisone.  It would have helped a little, but slowed down the vitamin D3 response.  You're on the right track at this point.  Another round of labs for your serum 25(OH)D, calcium and PTH will be in order after 30 days on this regimen.  You'll be looking for a 25(OH)D serum concentration up around 80 ng/mL (200 nmol/L), calcium within its normal reference range (That means no vitamin D3 toxicity) and PTH in the lower third of its normal reference range.

Take care and please keep us posted,

V/R, Batch

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  • 2 years later...
On 12/10/2018 at 4:43 AM, xxx said:

Hey Seff,

Thank you for the update.  It appears you're responding nicely to the vitamin D3 loading schedule... Good on you for skipping the prednisone.  It would have helped a little, but slowed down the vitamin D3 response.  You're on the right track at this point.  Another round of labs for your serum 25(OH)D, calcium and PTH will be in order after 30 days on this regimen.  You'll be looking for a 25(OH)D serum concentration up around 80 ng/mL (200 nmol/L), calcium within its normal reference range (That means no vitamin D3 toxicity) and PTH in the lower third of its normal reference range.

Take care and please keep us posted,

V/R, Batch

Just to update this post:

My serum 25(OH)D came back at 144ng/mL when I did this test back in 2018. Which suggests to me at that time, my D3 was in a high enough range before I started loading for me to be pain free but I wasn't.

I think what probably helped at the time in addition to my high D3 levels were the continued use of Benadryl, Probiotics and Tumeric (Curcumin) - 1100 mg due to persistent allergies.

==Current Situation==

Throughout the year, I lapsed with the regimen, general good health and nutrition. And about 2-3 weeks ago, like clockwork my CH cycle started.

Based on how the year went and the missed D3 maintenance doses, I started loading about 1-2 weeks ago for 8 days @ 100,000 IU daily orally, then an additional 3 days @ 100,000 IU daily sublingually with no relief. However, I stopped and cut back to the maintenance dose of 10,000 IU last week Friday and decided to add Benadryl because at the rate I was taking D3, I should have been pain free.

Four (4) days passed on the Benadryl and I began to see improvements (yesterday I was basically pain free). However, I messed up my diet and ate corned beef (which contains nitrates) and I woke up with a headache that has not left since 7am.

==The Plan Going Forward==

I chatted with my PCP today (but could not get a serum 25(OH)D test done today and probably won't be able to until after Christmas)

With that in mind, we believe my D3 levels are way above 144 as was reported when I had my test back in 2018 based on how often I have been taking it over the past 2 weeks. So instead we will focus on my allergies and anything that can cause a negative immune response.

I'm gonna stop taking the Benadryl and start using the following while on the maintenance dose of 10,000 IU of D3 daily:

- A 10 Billion Probiotic

- CO Q10 - 200mg

- QBC Plex (1,250mg Vitamin C, 500mg Quercetin and 50mg Bromelain)

- Cerasee Tea for 7 days (Gallic Acid and Catechins)

(https://healthyeating.sfgate.com/health-benefits-cerassie-tea-12057.html)

I will post again and let you know how this goes. I have also scheduled some time with my PCP to have a full allergy test done so that going forward, I will have an idea of what can and cannot eat because some food allergies manifest in ways that we would never know.

 

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On 12/10/2018 at 4:43 AM, xxx said:

Hey Seff,

Thank you for the update.  It appears you're responding nicely to the vitamin D3 loading schedule... Good on you for skipping the prednisone.  It would have helped a little, but slowed down the vitamin D3 response.  You're on the right track at this point.  Another round of labs for your serum 25(OH)D, calcium and PTH will be in order after 30 days on this regimen.  You'll be looking for a 25(OH)D serum concentration up around 80 ng/mL (200 nmol/L), calcium within its normal reference range (That means no vitamin D3 toxicity) and PTH in the lower third of its normal reference range.

Take care and please keep us posted,

V/R, Batch

Hey @xxx, @spiny and everyone else!

Seasons Greetings and Merry Christmas to you!

==Update - WINDOW AC UNIT possible cause?==

Since I last posted, I have seen very slight improvements with my CH (intensity, frequency and duration). I think this very, very slight improvement might have been due to the Quercetin, Bromelain and Vitamin C - QBC I've been taking (sometimes twice the dosage a day). I took 4mg of histal (Chlorphenamine Meleate) along with the other stuff today vs. going back on Benadryl and have been pain free for over 5 hours now (no shawdows etc.).

In addition to the above, I've made some lifestyle changes which include diet and also made sure that I kept my environment clean of all allergy triggers (e.g like dust). I have a HEPA air purifier which I recently bought to help with this. However, I was still getting hammered day after day, night after night with the headaches. Until I realized, it might be my window AC unit!!

==Mold Allergies==

I bought a window AC unit in October. In recent times (before I got my CHs - over the last month) each time I turn on my AC unit, for the first 15-30 seconds there is a damp, almost musty smell coming from the unit. At that time, I wondered if it was mold, but there is no visible mold growth on the vent or anywhere I can see - so I forgot about it. I have used my AC unit every night and day this week, but after doing some research on mold spores, I am now cognizant that that musty smell coming from the AC no matter how brief, is the first sign of mold growth and that might be the reason why I am not responding the the D3 Regimen like I have in the past.

The AC unit is also right opposite the foot of my bed, with a fan in between. If there is mold in the unit, each time I turn it on, mold spores are very likey being blown straight on me, my bed, my sheets etc. via the unit and fan.

I am unable to switch rooms, so I will try to cover the AC vents, clean my room, change my sheets and bed cover and see if the CH hits stop or at least are reduced. Not sure if doing any of this will help or if I will need to remove the AC from the window altogether for relief.

Let me know your thoughts and again I will keep you updated.

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On 12/26/2020 at 7:25 AM, xxx said:

He Seff,

Merry Christmas.  Mold spores are bad news for me.  I like your dosing plan.  Check your InBox.  I've sent you a message.

Take care,

V/R, Batch

Hi Batch,

Thanks, I'll check and PM you.

 

=General Update for The Board and Anyone Else=

I have been able to switch rooms with my parents over the past two days while taking the supplements mentioned above.

First Day = 18+ hours pain free

Second + Third Day = 26+ hours pain free

1 Headache per day vs 2-4 as I was experiencing before. Will make some changes in my environment and continue to post my progress as this might be helpful to another person reading.

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