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RSG

Intro / Vitamin D

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Howdy,

I just found this site! I've had clusters since I was 14 - about 15 years now. Every year, same time of year (with a few exceptions) and one large exception being that I had a gap year. Sadly, the CHs came back.

One thing I noticed in my initial skimming of the boards here is a lot of Vitamin D chatter. I've been low on vitamin D on almost every blood panel I can remember. Normally I take the vitamin for a few weeks and forget until the next time I go to the doctor and get reminded. Bad discipline on my part. Had I known that it could potentially helped my cluster headaches, that would've been easy motivation!

Can someone give me a brief synopsis of what some targets are? My most recent blood panel showed my Vitamin D, 25-OH total to be 25 ng/mL, which is definitely insufficient. It looks like my highest total has been 34. For those who have found relief using Vitamin D supplements, what has been the target?

Thank you for your time.

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Welcome RSG!

I am going to message Batch for you. He is the D3 Guru! Very nice and most helpful member of the board.

I use the D3 all year to prevent drops in my D3 levels. It can be a real miracle for some. Even if you don't get pain free, you will likely lower the intensity of your hits and they will ramp up more slowly.

Your are right, your D is way too low. You are looking for it to be around 80 -100ng/mL The Regimen is not just D3. There are other vitamins needed to go with it. But, it is all stuff you can buy locally or online.You can type D3 Regimen in the search bar and find ton of stuff. Can you imagine how heavenly it is to take your vitamins and prevent a cycle? Rather awesome.   

Drat, just remembered that Batch is having connection issues. Type D3 into the search bar and dig in!!! It is about 5-6 vitamins and some Benadryl added for those of us battling allergies. 

What tools are in your box now for fighting your CH? O2, energy drinks, Verap, etc.  

Glad that you found us! :) 

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Thanks for the reply!

Yes - a vitamin solution would be amazing and much, much cheaper.

The only tools I have found have been Zomig 5mg nasal spray and other remedies that only sometimes work... laying in front of a fan, taking a shower, sucking on ice cubes. Normally Zomig does the trick as long as I am able to use it very early on. I've also been seeing a chiropractor.

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Okay then. You have no O2 and that sucks big time. Your Neurologist  should have prescribed that right away. Some don't, incorrectly I might add, due to insurance hassles. But, it is your best abort out there. 

Has he put you on a med like Verapamil? That is a first line treatment along with a Prednisone taper for a week or two while the Verap builds in your body.

I suspect that you have read the links given by CHF. They will be valuable to you. :) 

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Hey RSG,

CH Father gave you the right link for the anti-inflammatory regimen treatment protocol at  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

I've made a couple changes since I posted that 2017 version.  In July of 2018, I switched brands and type of vitamin D3 from the Nature's Bounty oil-based 5000 IU liquid softgels to the Bio-Tech D3-50 50,000 IU water soluble (micellized) vitamin D3.  I've found the Bio-Tech D3-50 to be faster acting and more potent in elevating serum 25(OH)D than the oil-based formulations.

Data from the online survey of CHers taking this regimen now supports a longer accelerated vitamin D3 loading schedule from 12-Days at 50,000 IU/day vitamin D3 to 14-Days at 50,000 IU/day.  This change increases the total loading dose of vitamin D3 from 600,000 IU to 700,000 IU spread over 14 days at 50,000 IU/day for episodic CHers and 16 days for chronic CHers.  This also results in a new initial target serum concentration from 80 ng/mL to 90 ng/mL for episodic CHers and from 80 ng/mL to 100 ng/mL for chronic CHers.  The initial vitamin D3 maintenance dose of vitamin D3 is now 15,000 IU/day.  These loading schedules and maintenance doses apply to the oil-based liquid softgel vitamin D3 formulations,

If you follow my lead and that of several other CHers who switched to the Bio-Tech D3-50 50,000 IU vitamin D3 capsules as I have, the loading and maintenance doses will be different as follows.   If you're an episodic CHer start this regimen with the 12-Day loading schedule at 50,000 IU/day (one of the Bio-Tech D3-50 capsules a day for 12 days) then fall back to a new initial maintenance dose with the Bio-Tech D3-50 of one (1) capsule a week.   If you're a chronic CHer, start this regimen with a 14-Day accelerated vitamin D3 loading schedule (one of the Bio-Tech D3-50 capsules a day for 14 days) then fall back to a new initial maintenance dose with the Bio-Tech D3-50 of one (1) capsule a week. If you do the math, 50,000 IU divided by 7 days comes to roughly 7,000 IU/day as the maintenance dose with the Bio-Tech D3-50.  Due to the increased potency of the Bio-Tech D3-50 compared to the oil-based liquid softgel vitamin D3 formulations at the same dose, this equates to an equivalent of 15,000 IU/day of the liquid softgel vitamin D3 formulations. 

With either type of vitamin D3, if you haven't experienced a favorable response or complete cessation of CH symptoms by the end of the loading cycle, increase the loading period by two days at 50,000 IU/day for two days then drop back to the maintenance dose.  If there's still no response, within three days of the additional loading doses, you may be experiencing an allergic reaction to airborne of food borne allergens. 

These allergic reactions can be subclinical with no outward or obvious symptoms.  In this case, start a week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day.  Just be careful and not drive as this much Diphenhydramine will make you drowsy.  If you need to drive during the day, wait until you're home for the day then take 50 mg of Benadryl as you walk through the door, and another 50 mg at bedtime.  If there's no response to the Benadryl after five days, discontinue as an allergy is not the likely culprit preventing a favorable response to this regimen.

It's important to take all of the vitamin D3 cofactors and conutrients illustrated in the following photo.  In particular, it's best to double the magnesium dose from 400 mg/day to 800 mg/day while loading vitamin D3. Take 400 mg of magnesium in the morning with breakfast and the other 400 mg in the evening with dinner.  Doing this will help avoid osmotic diarrhea.  The Kirkland brand Adult 50+ Mature Multi is also very important as it's formulated with most of the vitamin D3 cofactors.  It just doesn't have enough magnesium or any vitamin K2 complex (MK4 and MK7).

ISwz2Ys.jpg

I1fb9Dm.jpg

At 22 cents per capsule taken at a maintenance dose of one (1) capsule a week, the Bio-Tech D3-50 is also the least expensive form of vitamin D3 at 3 cents/day. The Nature's Bounty has a price of 6 cents per 5000 IU vitamin D3 liquid softgel or 12 cents/day for the 10,000 IU maintenance dose.

It is very important to see your PCP/GP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH 30 days after start of regimen.  As long as you're CH pain free or have experienced a significant reduction in the frequency of your CH and your serum calcium concentration is within its normal reference range, your actual 25(OH)D serum concentration doesn't really matter.

Hope all this makes sense. I'll be publishing a revised version of this treatment protocol on VitaminDWiki as soon as a few key vitamin D3 experts and physicians have had an opportunity to comment on the new protocol.

Take care and please keep us posted.

V/R, Batch

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@Batch It would be good if the wiki were updated with this information as I just started and that is the guide that you had sent me. Therefore I am using with what is posted there. In any case it's too early to tell if it's effective for me or not I'm afraid but I'm willing to give it a try but can't afford to switch D3 now. I may not be following the regimen correctly anyway. I also add a lot of Vitamin C which I usually do during these episodes. I am not even sure what loading means.

Unfortunately I went from a wicked cluster headache episode to a pretty bad migraine a few days ago. My family doctor is pretty good with my headaches but it turns out I have a sinus infection, inflamed bronchi and a lot of chest congestion. I live in Phoenix where the heat is very high and we've been having bad air quality alerts for several weeks now. This year the density of the dust storms with no rain and the pollutants in the air have been particularly thick. I am convinced my headaches are related to and triggered by heat and air pollution as well as dust since every time I have an episode some or all of those factors come into play. Rain no longer (or rarely) comes into the city effect to clear the air and wash things down due to the urban heat island, only the haboobs make it in. It is the main reason I am moving north of Tucson in a few months.

In any case I'm not sure what to think any longer and am hoping the antibiotics, chest syrup and imitrex doesn't screw up anything else and I do feel better today but don't know what to attribute it to. Can anyone tell me why the several doctors I've asked about oxygen have waved it off for headaches? As if it was some "internet babble" as one put it? Years ago one doctor gave it to me in the office and it helped a lot on that day.

Anyway I didn't mean to hijack @RSG question as I am a newbie also and it is a good one. I'm just in a bad spiral where I don't think anything will help and it's hopeless. To him I would say to try it if you understand how to follow the regimen as it seems to have helped a lot of people without complications.

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On 8/7/2019 at 9:14 PM, Batch said:

As long as you're CH pain free or have experienced a significant reduction in the frequency of your CH and your serum calcium concentration is within its normal reference range, your actual 25(OH)D serum concentration doesn't really matter.

Wow that is a big change. Looking forward to the input on your update.

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Hey Jost,

Thanks for the feedback and sorry you're having a rough time.  I'll be updating my web page at VitaminDWiki as soon as I get some feedback on the protocol update from a few vitamin D3 experts and neurologists who treat CHers and migraineurs with vitamin D3.

I've been to Phoenix in the August time frame, so don't envy your situation with the temperature. Infections and allergies consume serum 25(OH)D rapidly, frequently leaving too little remaining to prevent CH or migraines.  The best course of action reported by many CHers when they encounter infections is to load vitamin D3 for 3 to 4 days and increase their vitamin C intake to at least 6 grams/day.   Allergies require a week to 10-day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) taken at 25 mg every four hours throughout the day.

(Loading vitamin D3 = taking a loading dose of 50,000 IU/day vitamin D3 for a few days to elevate serum 25(OH)D3 rapidly to a therapeutic serum concentration).  The following notional graphic illustrates the advantage of a 12-Day accelerated vitamin D3 loading schedule over just taking a maintenance dose of vitamin D3.  By "loading" you get to a therapeutic 25(OH)D3 serum concentration in 12 days where taking only a maintenance dose of 10,000 IU/day vitamin D3 could take upwards of one to two months to start experiencing a favorable response to this regimen with respect to CH or a viral infection.

AFvZz5p.jpg

Unlike bacterial infections that require an appropriate antibiotic, there are no silver bullets for viral infections.   Accordingly, in the case of a viral infection (colds and flu) bumping the vitamin D3 and vitamin C doses is the best and safest course of action.  Taking these vitamins helps your body's immune system resolve a viral infection faster and more effectively.  Taking an antibiotic for a viral infection is not only ineffective, antibiotics by their very nature are indiscriminate, so also kill off the friendly colonies of bacteria living in the GI tract called the microbiome.  As most of our immune systems reside in the GI tract, keeping the microbiome "happy" is prudent.  If your doctor has prescribed an antibiotic, be sure to start a course of probiotic as soon as you've completed the antibiotic.

Regarding migraine headache...  The basic anti-inflammatory regimen supplements as illustrated in the following photo by brand and maintenance dose help many migraineurs starting this regimen prevent their migraine headaches. Most of us taking the Bio-Tech D3-50 water soluble (micellized) 50,000 IU vitamin D3 capsules have found one (1) D3-50 capsule a week is an effective maintenance dose.

GTdJ4Eq.jpg

It's always a good idea to see your PCP/GP or neurologist for lab tests of your serum 25(OH)D, calcium and PTH.  Without knowing your 25(OH)D serum concentration, you're shooting in the dark at an appropriate vitamin D3 loading dose or where you are with respect to target 25(OH)D serum concentrations. 

For example, data from the online survey for CHers and other sources for migraineurs indicate the following mean 25(OH)D serum concentrations resulting in a significant reduction in headache frequency or complete cessation of headache symptoms.  For practical purposes, the following 25(OH)D3 concentrations become the initial targets when starting this treatment protocol.

Mean 25(OH)D Serum Concentration among Episodic CHers - 80 ng/mL

Mean 25(OH)D Serum Concentration among Chronic CHers - 90 ng/mL

Mean 25(OH)D Serum Concentration among Migraineurs - 120 ng/mL

The following normal distribution of 25(OH)D3 lab test results from the online survey harvest in July of 2018 tells an important story CHers and Migraineurs need to understand.

4rNVPRE.jpg

The green normal distribution curve illustrates the mean 25(OH)D3 serum concentration response of 80 ng/mL to an average vitamin D3 dose of 10,000 IU/day.  What this also indicates is half of the CHers (Episodic and Chronic) responding to this regimen needed a higher 25(OH)D3 concentration for a favorable response. 

The blue S-shaped sigmoid curve illustrates the cumulative probability.  As it's clear from the 25(OH)D responses, up to half of CHers starting this regimen, took a higher maintenance dose of vitamin D3 than 10,000 IU/day to experience a favorable response. That makes the blue sigmoid curve a reasonable  dose response curve.  In simple terms, a higher vitamin D3 dose results in a higher 25(OH)D3 serum concentration needed for a favorable CH response.

For reference and regarding safety of vitamin D3 doses > 10,000 IU/day and high 25(OH)D serum concentrations > 100 ng/mL (250 nmol/L), I've maintained my serum 25(OH)D between 130 ng/mL and 188 ng/mL over the last three years due to allergic reactions to pollen and mold spores with no problems.  My PCP is ok with my 25(OH)D serum concnetrations this high as long as my serum calcium remains within its normal reference range.  As you'll see in the following chart of my lab results... it has.

EndNrkY.jpg

Besides a higher 25(OH)D serum concentration between 120 ng/mL and 150 ng/mL, most migraineurs will need some or all of the following supplements for a pain free response.

o   300 to 900 mg/day CoQ10 (300 mg 3 times a day). CoQ10 is a must for CHers and migraineurs if taking statins

o   3 to 6 grams/day liposomal vitamin C (1000 to 2000 mg with breakfast, lunch and dinner)

o   1000 to 2000 mg/day Turmeric (Curcumin).

o   Probiotic with a high colony forming count containing a variety of Lactobacillus acidophilus, Lactobacillus plantarum, Bifidobacterium bifidum, and Streptococcus thermophilus.

o   300 to 600 mg/day Alpha-Lipoic Acid (ALA)

o   500 mg/day Resveratrol

o   500 mg/day Quercetin

o   3 to 6 grams/day L-Lysine

I take the first three of these supplements daily for good health and to keep my 75 year-old heart ticking.

Regarding oxygen therapy. Too many neurologists and most PCP/GPs have never treated a patient with CH so are unfamiliar with the Standards of Care recommended interventions (abortives and preventatives) for CH that list oxygen therapy as the first abortive of choice at 15 liters/minute.  The rest have been brainwashed by the Big Pharmas that oxygen therapy is ineffective for cluster and migraine headache and that the very expensive patented pharmaceuticals (read sumatriptan succinate [Imitrex] and its derivatives) are very effective.

What you need to do is print out the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias by the God Squad of neurologists, expert in treating patients with CH and who are also members of the ICHD 3 working groups for CH and other TACs.  They include: A. May, M. Linde, P. Sandor, S. Evers and P. Goadsby.  You can download a copy at the following link and take it to your neurologist when you ask for an Rx for oxygen therapy as an abortive for your CH.

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1468-1331.2006.01566.x

You can also download and print out the following link for: Treatment of Cluster Headache: The American Headache Society Evidence-Based Guidelines.

https://www.ncbi.nlm.nih.gov/pubmed/27432623

Results and Recommendations:  For acute treatment, sumatriptan subcutaneous, zolmitriptan nasal spray and high flow oxygen remain the treatments with a Level A recommendations.

I hope this slayed all the dragons making it difficult for you to control your CH and MH...

Take care and please keep us posted.

V/R, Batch

 

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