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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › Painfree Fullblown Cluster Attack VitD treatment

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Painfree Fullblown Cluster Attack VitD treatment (Read 2501 times)

Malibambo

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Painfree Fullblown Cluster Attack VitD treatment
Feb 15^th, 2022 at 7:19pm

Experienced a full blown cluster attack without the cutting behind the eye part. Has this happened to anyone else? 10 min in during oxygen treatment my body fell asleep but my mind was consious about what was happening around me.
Been on vit D treatment but got corona and it has spiraled my clusters out of whack but have burning scalp and sinuses but not the eye-pain.

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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Painfree Fullblown Cluster Attack VitD treatment Reply #1 - Feb 15^th, 2022 at 8:07pm That's what we call a phantom CH and those of us who get 'em know exactly what you're talking about. Everyone else thinks we're completely mad because you can't have a headache without pain, and perhaps they're right, but at least you know you're not alone.
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Malibambo

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #2 - Feb 17^th, 2022 at 3:21am

Everyone with clusters should be aware that what we have is more than headaches. But even though I'm aware I've had to change my whole perception about clusters after this. 🙈
I'm just not sure if we "just have" anafylactic shocks or if I have narcolepsy. Shocked

I thought phantom CH was the same as shadows.
Thank you for your reply.

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AussieBrian

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #3 - Feb 17^th, 2022 at 5:53am

It's always a pleasure if we can help, Malimbambo, and welcome aboard the good ship ch.com.

We also love a good story so if you'd like tell us a little more about your journey with this monster we'll be only too happy to make little suggestions which might ease the nightmare we all endure.

You're amongst friends here and we truly understand.

We care.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Batch

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #4 - Feb 21^st, 2022 at 2:06pm

Hey Malibambo,

How much vitamin D3 are you taking and are you taking all the cofactors? Data from the online survey of CHers following the anti-inflammatory regimen CH and MH preventative treatment protocol indicate changes in how CH presents are common as serum 25(OH)D3 concentrations rise with higher vitamin D3 doses. There were reports of Phantom CH where all the classic CH symptoms are present except no pain.

It is also common for some CHers to experience feelings of euphoria very similar to that produced by opioids following a successful CH abort with oxygen. This is caused by endorphins (endogenous morphine) released from the pituitary at the cessation of pain. These endorphins bind to opioid receptors inducing euphoria and sleep. The principal function of endorphins is to inhibit the communication of pain signals.

All infections (viral, bacterial and fungal) trigger the immune system into action with resulting inflammation. Infections caused by the coronavirus are no different. This inflammation sends CH into orbit with wild swings in frequency, intensity and duration. This is usually associated with Mast Cell activation with the release of histamine. As histamine to a CHer is like Kryptonite to Superman, it's bad news. Sound familiar?

The best course of action is to start a short loading schedule taking 50,000 IU/day for at least 5 days to a week to elevate serum 25(OH)D3 then drop back to a vitamin D3 maintenance dose of 100,000 IU once a week. That works out to an average vitamin D3 dose of ~ 14,000 IU/day. Double the magnesium dose while loading vitamin D3. If the CH persist, I start what I call the "Full Monty" on top of the basic vitamin D3 regimen.

The Full Monty is a combination of supplements with antihistamine properties that include 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3 fatty acids. It also includes 8 grams/day vitamin C taken in divided doses throughout the day and 10 mg of Melatonin at bedtime. I stay on the Full Monty until I'm CH pain free for a few days then gradually reduce the doses of these supplements.

Hope all this makes sense and helps.

Take care and please keep us posted.

V/R, Batch

« Last Edit: Feb 21^st, 2022 at 2:07pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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Malibambo

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #5 - Feb 24^th, 2022 at 7:36pm

I'm up 2 high on vit D and have paused vit D treatment. Trying to get medication. I just got out of a year with clusters (on verapamil) when corona hit and I got burning scalp pain, memory loss and extreme sound sensitivity.
I had to start vit D to get rid of the symptoms. 🤷
But after 10 months long covid I took pfizers vaccine and it happened again. 💩 Asked for help from my neuro who said my symptoms weren't neurological. 😑
I'm obviously not doing vit D treatment correctly but don't know how I'm supposed to medicate covid triggered CGRP (?) 😑 🤷 During my 2 years with covid burns I haven't had a single attack but now I'm back for another clusteryear and I've ruined vit D treatment for myself. Just want to try emgality and hope for some cluster vacation. 🙄

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Batch

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #6 - Mar 6^th, 2022 at 1:00pm

Hey Malibambo,

When you said your vitamin D3 was too high, what was your 25(OH)D3 serum concentration? Did a doctor tell you it was too high and stop taking vitamin D3? Did your doctor order labs for your serum calcium and PTH (Parathyroid Hormone)?

The 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D3 lab assay is a very poor indication of too much vitamin D3 causing what is called vitamin D intoxication/toxicity. The lab assay for serum calcium is far more important. In this case, if the serum calcium concentration exceeds its normal reference range, this condition is known as hypercalcemia (too much serum calcium) a.k.a., vitamin D3 intoxication/toxicity.

In practice, it is difficult to take enough vitamin D3 to elevate the calcium serum concentration above its normal reference range. Most people would need to take vitamin D3 at doses greater than 100,000 IU/day for many months to push their serum calcium above its normal reference range.

The following 5-year chart of my labs for serum 25(OH)D3, calcium and PTH, illustrates how people can safely elevate 25(OH)D3 serum concentrations well above 100 ng/mL (250 nmol/L) without forcing their calcium serum concentration above its normal reference range.

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

As you can see, I've kept my 25(OH)D3 serum concentration well over 100 ng/mL (250 nmol/L) for 5 years yet my serum calcium has remained within its normal reference range so there was no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity. My PCP has no problem with my 25(OH)D3 as high as 277 ng/mL (692 nmol/L) as long as my serum calcium remains within its normal reference range.

Our immune systems keep us healthy if they get enough vitamin D3. The average adult needs 6,000 IU/day to 8,000 IU/day vitamin D3 to keep their immune systems capable of fighting off infections (viral, bacterial and fungal). As
CHers, we need a minimum of 10,000 IU/day to control and hopefully prevent our CH. In reality, what you did by stopping vitamin D3, was to prevent your immune system from functioning normally when it needed vitamin D3 the most.

To give you an idea what this really means, I've been taking an average of 15,000 IU/day vitamin D3 since 2011 and much higher doses to fight off an immune system response to allergens caused by spring pollen and fall mold spores. I've not had a cold or the flu in all that time. Moreover, I've not had COVID-19 since the Wuhan coronavirus landed in the US and I've been exposed several times. I also avoid the COVID-19 mRNA biologic Jab at all costs. There are a number of studies published that indicate the mRNA vaccines weaken the immune system leading to increased rates of infections, cancers, cardiovascular and autoimmune disorders. See the following link to VitaminDWiki.com for a lot of good information about vitamin D3 and COVID-19.

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

ideos

Bottom line, you should see your PCP and ask for labs of your serum 25(OH)D3, calcium and PTH. If your 25(OH)D3 serum concentration is below 80 ng/mL and the CH beast is jumping ugly, this is a classic indication you need to be taking more vitamin D3.

The best way to elevate serum 25(OH)D3 rapidly and safely is to take a loading dose of 50,000 IU/day for a week to 10 days then drop back to a vitamin D3 maintenance dose of 10,000 IU/day plus all the cofactor supplements illustrated in the photo below by brand and dose that I take and suggest to fellow CHers. It's also prudent to see your PCP for another set of labs for your serum 25(OH)D3, calcium and PTH after 30 days.

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

Take care and please keep us posted.

V/R, Batch

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Traveller CH.com Veteran Offline Posts: 148 Tampa, FL Gender:	Re: Painfree Fullblown Cluster Attack VitD treatment Reply #7 - Mar 9^th, 2022 at 12:12am I thought we were done with Anti-Vax lies and distortions on this site. Moderators?
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AussieBrian

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #8 - Mar 10^th, 2022 at 11:59pm

"...I've been taking an average of 15,000 IU/day vitamin D3 since 2011... I've not had a cold or the flu in all that time. Moreover, I've not had COVID-19 since the Wuhan coronavirus landed in the US and I've been exposed several times....".

Batch, you continue to promote Vitamin D as an alternative to covid vaccination.

There are many, many CHeads now following the D3 regimen and by your calculations not one of them should have contracted this disease.

I'll be interested to hear that everyone of them is disease free.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Batch

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #9 - Mar 12^th, 2022 at 3:44am

Brian,

Interesting comment and good question. I'd like to see the answers to your question as well. I suspect there's a dose-response effect as measured with the 25(OH)D3 assay.

My wife has maintained her 25(OH)D3 serum concentration around 125 ng/mL (312 nmol/L) to prevent her migraine headaches for the last 11 years. She's now 85 and has not experienced any viral infections including colds, flu or C19. I've kept my 25(OH)D3 around 150 ng/mL (375 nmol/L) with higher 25(OH)D3 serum concentrations as high as 270 ng/mL (675 nmol/L) during Spring pollen and fall mold spore seasons. I've not experienced any viral infections including colds, flu or C19 since starting this treatment protocol in October of 2010.

I've had 30 members of my family following this vitamin D3 treatment protocol for good health since 2011 with most of the adults taking 10,000 IU/day vitamin D3 and kids taking 50 IU vitamin D3 per pound of body weight/day. That includes three grand babies who were bathed in maternal vitamin D3 from conception through breastfeeding. At least 10 of them have had a brush with C19. All have recovered nicely. 4 were asymptomatic, 4 thought it was a 2-day cold, 1 lost her sense of smell and one thought it was a bad cold. 8 of the 10 had the T-Cell assay for C19 and were positive.

Although the following is anecdotal due to low numbers, it appears a vitamin D3 dose of 10,000 IU/day with a 25(OH)D3 response around 80 ng/mL (200 nmol/L) does not prevent a C19 infection, but if it does occur, it is relatively mild. If the vitamin D3 dose is ≥12,000 IU/day with a 25(OH)D3 response ≥ 125 ng/mL (312 nmol/L), this appears to have a preventative effect with no known infections.

I'm working up a survey question on this topic.

Take care,

V/R, Batch

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pattik

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #10 - Mar 12^th, 2022 at 3:55pm

AussieBrian wrote on Mar 10^th, 2022 at 11:59pm:

There are many, many CHeads now following the D3 regimen and by your calculations not one of them should have contracted this disease.

Hey Brian! I hope you are well.

I believe the quoted part of your post is a misrepresentation of Batch's statements. PREVENTION of covid is not an accurate description of what has been promoted. What HAS been promoted is vitamin D's role as an anti-inflammatory in combination with other things to minimize the infection and resulting devastating inflammatory response. In no way does vitamin D by itself prohibit infection by a novel pathogen, and suggesting Batch said this is a false premise.

Two years ago, my D blood level was around 140ng/ml when I contracted it. Although I had a rough four days, I was spared a catastrophic outcome. If I knew then what we know now regarding adding zinc, C and a zinc ionophore, I might have avoided most of it.

I understand the temptation to dismiss ideas that don't follow one's political narrative. But it's not helpful when one only puts out contemptuous remarks and doesn't allow for intelligent discussion and disagreement.

Take care,
Patti (up over)

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Traveller CH.com Veteran Offline Posts: 148 Tampa, FL Gender:	Re: Painfree Fullblown Cluster Attack VitD treatment Reply #11 - Mar 12^th, 2022 at 10:54pm If Batch did not suggest that D3 can prevent Covid infection, then what is this? *"If the vitamin D3 dose is ≥12,000 IU/day with a 25(OH)D3 response ≥ 125 ng/mL (312 nmol/L), this appears to have a preventative effect with no known infection."* Quoted directly from his post above.
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Hoppy

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #12 - Mar 12^th, 2022 at 11:06pm

Batch wrote, Our immune systems keep us healthy if they get enough vitamin D3. The average adult needs 6,000 IU/day to 8,000 IU/day vitamin D3 to keep their immune systems capable of fighting off infections (viral, bacterial and fungal). As
CHers, we need a minimum of 10,000 IU/day to control and hopefully prevent our CH. In reality, what you did by stopping vitamin D3, was to prevent your immune system from functioning normally when it needed vitamin D3 the most.

To give you an idea what this really means, I've been taking an average of 15,000 IU/day vitamin D3 since 2011 and much higher doses to fight off an immune system response to allergens caused by spring pollen and fall mold spores.

Hi Batch, just curious, how much vitamin D3 do you take daily together with the other cofactors during the months of Spring and Fall.

Cheers Hoppy

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The Thinker

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #13 - Mar 14^th, 2022 at 5:01am

Speaking to the question of being unvaccinated and exposed to a household of double vaccinated folks whom contracted Covid 19 and spent 4-5 days in bed, I was surprised that I didn’t have any symptoms but presume I have antibodies through natural exposure.

Since taking Vitamin D seriously, understanding more of the literature and realizing if I continued to eat poorly, remain 15kg over my ideal weight and not exercise; then no amount of Vitamin D was going to help me; it became a choice of lifestyle change for me.

Having now adopted a ketogenic diet, dropped soda pop and bread / pastry and going for a run every other day, alongside maintaining a 25(OH)D level between 70-100ng/ml - I feel the best in ages and I’m not surprised the mostly correlative studies I’ve read looking at Covid 19 and Vitamin D levels suggest I had a fighting chance of seeing the outcome that I did; I’ve quickly reduced my confounding risks through burning roughly 10 blocks of lard off my torso and counting!

I can only share my experience; I certainly believe caution and care should be taken approaching Vitamin D supplementation, but nothing will personally take away from how amazing it has been for me in stopping my cluster headache as well as introducing me to a new way of approaching health; embracing nutrition and finding my passion for fitness and optimal health again.

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AussieBrian

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #14 - Mar 14^th, 2022 at 5:55am

I feel quite sad for our new friend, Malibambo.

Brand new here, only three posts, yet her thread has been completely hijacked as a discussion about VitD and Covid.

We love you, Malibambo, and beg forgiveness!

Even so, I reckon this subject deserves a thread of its own with a quiet nod of apology to a new ClusterHead seeking just a little bit of honest help,

Brian down under.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Malibambo

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Re: Painfree Fullblown Cluster Attack VitD treatment
Reply #15 - Mar 30^th, 2022 at 7:21pm

I'm still here. I'm hoping for some help later this week for my anafylaxia 🥰
I think I'll be able to lower my vit D dosage after getting better antihistamins and cortisone. But I guess covid will spiral my clusters out of whack every spring and autumn for 4 weeks in the future years to come. 🙄😝
Just a guess Wink

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Painfree Fullblown Cluster Attack VitD treatment Reply #16 - Mar 30^th, 2022 at 10:51pm Yes, Spring & Autumn are known times of the year for the beast to pay some of us clusterheads a visit, myself included, but since being on the vitamin D regiment, I've only had two short visits from the beast in the past 10yrs. Cheers Hoppy
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