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I think I'm not the only one who hadn't caught up with this change in Batch's (xxx's) recommendations for what to do about a CH flare-up.  I'm quoting this from another post of his.  For those who aren't familiar with this overall topic, I'll say again that this is recommended during a CH cycle, not as something to do when out of cycle.

"Ditch the Benadryl (Diphenhydramine HCL) and start taking 3 grams/day Quercetin.  Quercetin is an excellent antihistamine and unlike Diphenhydramine, there's no drowsiness or time limit on dosing." 

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Again please be careful folks.  Much of what is being suggested or recommended based on experience, inference and other reports.  Its easy to let logic  and deduction make things seem appropriate.  The fact is there are observational reports and many positive results posted but there remains a paucity of proof.  There are some limites scope studies underway but that is a long way from results.  So when you start tweekng a theoretical construct to "improve it" there are some foundational concerns,  In recent history we have seen the results of inferential treatments and the limited use some advocated therapies have.  )think covid and all the espoused not disproved interventions)

 

The reality is we know little about things like Quercetin and its effects in many situations.  Sudies are needed to better understand.  Each person has a option to try what they will but don't take it as gospel.

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I have been using chlorpheniramine for 25 years now with no known issues. Never makes me tired or anything. Hopefully there is no long term problem coming.

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4 hours ago, Pebblesthecorgi said:

The fact is there are observational reports and many positive results posted but there remains a paucity of proof.  There are some limites scope studies underway but that is a long way from results.  So when you start tweekng a theoretical construct to "improve it" there are some foundational concerns,

I'm having a hard time knowing what you're referring to here. The D3 regimen?  Antihistamines?  On what are there "some limited scope studies underway" -- quercetin?  The D3 regimen?  Are you saying that Batch (xxx) is inappropriately "tweaking a theoretical construct" by recommending Quercetin in place of Benadryl? 

Maybe your final paragraph is a summary of what you are saying:

4 hours ago, Pebblesthecorgi said:

The reality is we know little about things like Quercetin and its effects in many situations.  Sudies are needed to better understand.  Each person has a option to try what they will but don't take it as gospel.

I have no personal interest in this, except to re-post Batch's recommendation for those who might have missed it, but a quick internet scan shows, among other things, this statement from a 2016 published study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808895/): "As a widespread flavonoid, quercetin is a safe dietary supplement based on its broad range of biological effects in animals," and there are in fact many other journal reports that express positive things about quercetin with no major cautions except about taking too much. I see virtually no negative comments about quercetin in reasonable doses at any of the usual sites (WebMd, Mt. Sinai, Mayo, etc.). 

For full disclosure--again making clear that my only intention was to be sure that people who cared saw Batch's new recommendation--it does seem that Batch's recommended 3 gram daily dosage could be contrary to some recommendations, where it is commonly said that in some studies kidney damage occurred at doses greater than one gram per day.  Maybe that's what you were referring to? (Needless to say, Benadryl is not without its own risks, either.)

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Re: Ditch the Benadryl (and switch to Quercetin) – A little history and UPDATE

When it was clear that a high percentage of CHers who were either slow responders or not responding to the anti-inflammatory regimen treatment protocol in early 2011, I began looking for reasons why.  The common thread that emerged from all the feedback from CHers reporting this problem and searches of open source medical literature was a combination of allergic reactions and systemic inflammation. 

Both conditions involve the immune system.  As systemic inflammation is common to nearly every medical condition and disease from colds to cancer, trauma and surgery, I focused my efforts on ways to combat allergic reactions.  It became clear that the histamine released from mast cells during an allergic reaction was a very potent CH trigger even for CHers CH pain free taking a vitamin D3 maintenance dose of 10,000 IU/day. It happened to me.  Hence the phrase, Histamine to a CHer is like Kryptonite to Superman.

My first reaction to being blasted out of a 3-year CH pain free stint in March of 2015, by a huge pollen fall from Alder trees that turned my black pick up gray was to start loading vitamin D3. WgASE8i.jpg

After 4 days of escalating vitamin D3 doses with no joy, it became obvious that I needed to treat the allergy.  A quick review of available open source medical literature indicated a first-generation antihistamine passed through the blood brain barrier (BBB) to block histamine H1 receptors at the cellular and nuclear levels.  The pharmacokinetic studies of Benadryl (Diphenhydramine HCL) indicated 25 mg four times a day was a safe and effective dose of this first-generation antihistamine and anticholinergic – a drug that blocks the action of the neurotransmitter cholinesterase, the enzyme that enables nerve impulses to pass between nerve synapse. 

As the pharmacodynamic studies also eluded to a possible connection with neurodegenerative diseases including Parkinson’s and Alzheimer’s after prolonged use, it appeared a week to 10 day limit on exposure to Diphenhydramine was more than adequate.  Although I began suggesting Benadryl (Diphenhydramine HCL) in PMs and posts to CHers in 2015, I didn’t add it to the anti-inflammatory regimen treatment protocol until 2017.

The COVID-19 pandemic has resulted in an explosion of RCTs examining the effects of many pharmaceuticals and nutraceuticals as interventions and preventatives for this disease.  One of the pop up nutraceuticals that’s gained popularity in treating COVID-19, has been the flavanol Quercetin, one of Mother Nature’s plant-based supplements.  As an ionophore that enables water soluble zinc ions to penetrate cell walls made of fatty acids and enter cell cytoplasm to inhibit viral replication, Quercetin has replaced chloroquine and hydroxy chloroquine (Quinine) as a more cost effective alternative of choice with no adverse side effects.

A quick review of clinicaltrials.gov revealed the following for Quercetin:

62 registered RCTs

32 completed RCTs

6 RCTs registered as intervention for COVID-19 OR SARS-CoV-2 – none completed as yet.

Basic Science and Safety studies – No adverse events noted.

A quick check of the FDAs Adverse Events Reporting System (FAERS) revealed zero deaths and zero adverse events.  Even Medscape gives Quercetin a clean bill of health. 

A review of naturopathic medical literature indicates Quercetin helps lower blood pressure and it has antioxident, anti-inflammatory, antiviral effects that are enhanced synergistically when taken with vitamin C.  Although the suggested dose is 500 mg/day to 1000 mg/day, there have been studies taking up to 5000 mg/day with no adverse events noted.  Finally, Quercetin is a potent antihistamine.  Given its excellent safety profile, (far safer than aspirin or verapamil) and its use with zinc as an ionophore in treating COVID-19, I’ve added Quercetin to the anti-inflammatory regimen to be used in place of Benadryl (Diphenhydramine HCL) and as part of the immune boosting strategy to help prevent vital infections including COVID-19.

Regarding dosage.  500 mg/day up to 1000 mg/day may be sufficient for most CHers.  However, several CHers with suspected allergic reactions have required up to a week or more loading vitamin D3 at 50,000 IU/day while taking 3 grams/day Quercetin and 3 grams/day Turmeric (Curcumin) to achieve a CH pain free response. 

So there you have it.  Why I say "Ditch the Benadryl."

* Added Note:

If Quercetin is not proving effective after 3 days of use, add Benadryl (Dipphenhydramine HCL at 25 too 50 mg/day for week to 10 days. 

Rationale:  A few CHers have reported no joy using Quercetin at doses up to 3 grams/day as an antihistamine, but found adding Benadryl at 25 mg every 4 hours helped control their allergic reaction allowing vitamin D3 to prevent their CH. 

My own experience using Quercetin as an antihistamine through March and early April, the heavy pollen time here in the Puget Sound area of Washington, is mixed.  It worked to prevent obvious allergic reactions to the Alder pollen roughly half the time keeping the CH beast from jumping ugly.  There were times, however, where I could feel the symptoms of an approaching CH while taking 3 grams/day Quercetin. 

At these points, I added 25 to 50 mg/day Benadryl (Diphenhydramine HCL) and this proved effective in preventing these symptoms of incipient CH.  Accordingly, my comments to ditch the Benadryl and switch to Quercetin were premature.  I now suggest using Quercetin as the primary antihistamine at doses up to 3 grams/day.   If this is not proving effective after 3 days (72 hours), start adding Benadryl (Diphenhydramine HCL) at 25 to 50 mg/day.

Take care,

V/R, Batch

 

 

Edited by xxx
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As Batch alluded to above, Quercetin is being used as an effective antihistamine and potent immune booster.

Actually, over the last few weeks on Amazon, Quercetin 1000mg supplements have been in VERY high demand. Amazon is constantly playing catch up and regularly out of stock.

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The trail is certainly impressive and there is a lot of scattered data unfortunately none of it really rises to the level of proof required to make it a bonafide  treatment for cluster headaches.  Much of the data is speculative and inferential.   It is certainly reasonable to try these things but without rigorous measure of endpoints, control groups and analysis based on properly done studies the information remains in the realm of anecdote.

 

Indeed Quercetin has emerged as a possible tool in the battle of covid and much is being fast tracked in terms of publishing but in the end we still have no real idea if itis an effective intervention.  There seems to be no ill effects (unless it is substituted for a known treatment and it turns out quercetin doesn't really help).  If the covid experience has taught us anything it is how easy it is to think something is an effective treatment until it is shown not to be.  

 

With all the treatment options being explored simultaneously it is confusing and difficult to get to a bottom line.  Successful reports of Vit D in Covid treament were largely focused on Vit D deficient  individuals (by conventional values)  which can suggest there are other things going on in their lives and metabolisms.

 

Unfortunately no matter how much something sounds good or how logical the inferential information is none constitutes proof and remains fodder for properly done studies.  Another great example is Dr Sewells much touted report with clusters and psychedelics.  He did actually confirm the diagnosis but in the end he too was just reporting survey data.  The work going on a Yale with a control group is the very best way to establish efficacy however that sophisticated study seems to suffer from recruitment issues which I find a bit shocking.  It highlights just how hard it is to establish real proof when it comes to treatments.

 

Clusters headaches are particularly a problem to prove efficacy because of the mostly episodic nature.  You never really know if the intervention helped the condition, helped you cope with the condition or you simply went out of cycle.

 

Presenting ideas,  suggesting ever changing protocols, keeping track of self reporting and exploring new ideas is laudable and hopefully we will have a unified effective intervention but it will require a scientific discipline that is hard to achieve.

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  • 2 weeks later...

So glad I found this!  i've been doing benedryl and my eyes have gotten really dry, so have stopped it, but wasn't sure what to do.  Ordering Quercetin now!  I have taken it before, don't remember why I stopped.  Trying again.  Thank you!

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Pebbles,

Interesting comments.  What are you telling readers of this thread?  Is it the age old aphorism dating back to biblical times – “All that glitters is not gold” or is it in your opinion, there’s insufficient medical evidence that vitamin D3 and its cofactors help prevent cluster headache or help prevent serious infection by the Wuhan virus resulting in COVID-19?

If that’s your opinion, wonderful.  This is exactly what this forum is all about, open discussions and the free exchange of information, ideas and experiences.

Take care,

 

V/R, Batch

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it is my opinion.  I believe most of the evidence in Vit D and covid applies to folks with conventionally low values and is still be sorted out..  the Cluster data is problematic because it largely represents "numerators in search of denominators"  Hopefully the controlled studies underway will help.   

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  • 3 weeks later...

Pebbles,

I think we can agree, a gold standard, randomized, double blind, placebo controlled RCT of vitamin D3 and cofactors as an intervention for cluster headache is needed.  Dr. Mark Burish, MD, PhD., Director, Will Erwin Headache Research Center, UT Houston Health Science Center and featured speaker at Clusterbusters conferences registered just such an RCT on ClinicalTrials.gov 30 Sept 2020.   As Dr. Burish’s study is based on the anti-inflammatory regimen, I’m confident the results will be compelling.

His study also uses a Crossover design feature where following the double blind phase, participants will be unmasked and those who received the placebo will be given the same vitamin D3 and cofactor intervention/treatment.  This will serve as a force multiplier adding strength to the study conclusions as the crossover design reduces the influence of confounding factors by allowing crossover participants to serve as their own control group.  As this RCT won’t start recruiting until later this year, it’s going to be a couple years before it concludes any results. 

On the other hand, with respect to the use of vitamin D3 as an intervention for a Wuhan coronavirus infection, a.k.a., COVID-19, there are 34 studies registered in ClinicalTrials.gov.  Most are RCTs and five have already reported out concluding favorable results.  See the following link for details.  http://vitamindwiki.com/tiki-index.php?page=COVID-19+treated+by+Vitamin+D+-+studies%2C+reports%2C+videos#TR

As Meta-Analyses and Systematic Reviews rate highest in the hierarchy of medical evidence pecking order above RCTs, the meta-analyses at the following link provide clear proof of efficacy.

https://vitamindwiki.com/Vitamin+D+supplementation+fights+COVID-19+%E2%80%93+11th+meta-analysis+Jan+24%2C+2021

Interesting comment (the Cluster data is problematic because it largely represents "numerators in search of denominators.").

As a rule, I try to avoid circumlocution.  What are you trying to tell readers of this thread… or me?  Are you questioning the role of the virgule, or are you suggesting an intervention in search of a pathology?  Please elucidate.

Take care,

V/R, Batch

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The numerators in search of denominators is a common expression in the research world.  It reflects the bias or observations  of individuals who treat a specific diagnosis with a some intervention and see improvement and credit the intervention.  Then later its determined  the problem resolved for other reasons unrelated to the intervention.  It is why power calculations are required in research before starting.  If a study does not have enough participants to detect a difference then you are wasting  time doing the study..A power calculation helps you set the denominator so a real change can be detected.  Look at the hydroxychloroquine story.  Covid come, the chinese and italians say hey this works, people go nuts taking the stuff and eventually studies show no real help as regards outcomes.  This is an example of numerators in search of denominator where the numerators are folks taking hydroxychloroquine (with or without proof of covid dx)and we have no idea what the denominator is because its unreported or unknown.  Just because someone had covid, took hydroxychloroquine and got better does not mean the hydroxychloroquine did anything.  So my comment was not meant to be circumlocation.  Its a common expression in the world of medical research especially in situations where drug intervention is studied.. 

 

""What are you trying to tell readers of this thread… or me?  Are you questioning the role of the virgule, or are you suggesting an intervention in search of a pathology?  Please elucidate."   

 

II'm not even sure I know what this means.  My intent is to emphasize the importance of a process to evaluate interventions which is valid and meaningful..Yes a double blind placebo controlled randomized study is the gold standard.  You can throw in some cross over for good measure.  In the end if its under powered you may get a Type 2 error (a false negative) which would be a shame.  

 

The Vit D and Covid studies in the database are interesting but the ones reporting positive results are mostly in nutritionally challenged folks have levels below conventional levels.  There are far more unreported results and incomplete studies in the database.  the treatment of covid is still being vigorously studied and we have a long way to go.  There is much debate in the medical community about what interventions work and as you likely know its very contentious.  Just look at the controversy with MATH+ advocates.

 

Don't get me wrong I think taking the D3 regimen is worth trying (I use it myself though it doesn't seem to help me individually)  I look forward to studies demonstrating some degree of efficacy.   

Don't mean to ruffle your feathers, I admire your efforts and hope you are proven correct.  I temper everything with skepticism as its in my nature.

 

 

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3 hours ago, Pebblesthecorgi said:

I temper everything with skepticism as its in my nature.

.....clusterheads who have not developed a healthy dose of skepticism are doomed to spend years (decades?)  sitting in a dark room with blue cheese lined tin foil on their head, a shot of cider vinegar by their side, with a nostril full of cayenne pepper, a hand searching for the carotid to press, regrets over the perfectly good teeth pulled, in a Topomax daze and unable to THINK away the pain, while dialing the chiropractor whose office is next door to the acupuncturist...... both with promises of immediate relief........................

Edited by jon019
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  • 2 weeks later...

Skepticism......

I have been skeptical of almost everything known to treat CH because I have tried them. But we can't give up. To me, the most difficult part of determining efficacy for any treatment is the fact that it just stops working after a while. Verapamil worked for me for about 2 years, I had to keep upping the dosage to get results, and then it just stopped working period. I used MM for 4 to 5 years successfully and then it just stopped working. I started the d3 regimen  and have been 'loading' for 15 days now. I am also using Quercetin @ 3,000mg a day because I have allergies. I have gone from 5 to 6 attacks a night down to 2 a night with reduced intensity. I am currently waiting on blood test results to see where I am at. I am still hopeful that the attacks will stop. My point is simply this, the medical community as a whole knows very little about CH or how to treat it. The folks here at Clusterbusters held my hand and walked me out of very dark time when my CH was at it's worst, and words cannot express my appreciation for that. If it wasn't for people like batch, CHfather, and many others we would all be experiencing a lot more pain than we already are. These folks have worked constantly to provide the CH community with alternatives or new things to try when many of the known methods just stop working. The only thing we know for sure is that, not everything works for everybody, but in many cases we see results......at least for a while. My experience has been that a lot more help or 'next steps' can be found here than can be had from the medical community and can be tried or attempted in a lot shorter time. 

Trying to find fault with someone's attempt to help, helps no one.

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On 2/15/2021 at 1:36 PM, xxx said:

for a Wuhan coronavirus infection

I would like to express my extreme discomfort I feel due to the quoted comment. It is my opinion it is racist and could easily offend an Asian member, perhaps causing them not ot find the help they need to deal with this awful affliction. This statememt is NOT personal, except for me.

Thank you very much.

Yours

Into Light

Edited by Into Light
clarification
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  • 2 months later...

Just reporting here that one person I know of has had a very manageable cycle lately, which that person attributes to having switched to Quercetin (starting with .5g daily about 6 weeks before the cycle began, and upping it to 1g when the cycle began).  Since everything is guesswork, it's not really possible to say that it was the Quercetin that made the difference, but this person feels like maybe it did.

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Hello, my boyfriend has chronic cluster headaches. It has been a hard year with the pain increasing every month. Please email me if you have any suggestions. Thank you, Aylin 

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Posted (edited)

Hey Aylin,

I've left you a message.  Check your PM inbox.  In the mean time click on the following link.  It will download the published version of the anti-inflammatory cluster and migraine headache preventative treatment protocol.  If you want to help your boyfriend, get him started on this treatment protocol. It will help control and possibly halt his cluster headaches. 

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

The following photo illustrates the supplements in this treatment protocol.  You can order all of them from amazon and buy most of them at Costco.

spsCupv.gif

This treatment protocol includes a Bio-Tech D3-50 50,000 IU water soluble form of vitamin D3 in a single capsule.  This treatment protocol also includes the cofactors, other vitamins and minerals that the body needs to process the vitamin D3.

Why take vitamin D3 and cofactors?  Cluster headache sufferers tend to be vitamin D3 deficient or insufficient.  The following normal distribution chart illustrates results of 313 CHers' lab tests for 25(OH)D3 before starting this treatment protocol.  All were experiencing active bouts of CH.  As you can see, 2/3 of the CHers lab results for 25(OH)D3 are below 30 ng/mL and all are well below the 80 ng/mL most CHers need to experience a significant reduction in CH frequency or a CH pain free response.  This usually requires a vitamin D3 dose of 10,000 IU/day or 50,000 to 70,000 IU/week.

RAWsxuR.jpg

25(OH)D3 is the first metabolite of vitamin D3 that's used to measure its status.  The normal reference range for the 25(OH)D3 serum concentration is 30 to 100 ng/mL.  Most cluster headache sufferers need a 25(OH)D3 serum concentration of 80 ng/mL to experience a significant reduction in the frequency, severity and duration of their CH.  Some require a much higher 25(OH)D3 serum concentration.  I need mine up around 180 ng/mL to remain CH pain free during the high pollen season (for me late March through late May so take up to 60,000 IU/day of vitamin D3).  In the 10+ years I've been providing information outreach on the benefits of this treatment protocol for CHers with thousands of CHers taking it, there has yet to be a single case of hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.

If you want to help your boyfriend, get him started on this treatment protocol asap.  It is very safe and healthy for us.  It's so safe and healthy, I've had my entire family taking it since 2011.  That includes my 84 year old wife.  She was a 20 year episodic migraineur when she started this treatment protocol in December of 2010.  She hasn't had a single migraine since and has more energy now than she did at 55.  Our three youngest grand babies were bathed in maternal vitamin D3 from conception through breast feeding because my daughter and niece have been taking this regimen since 2011. 

These kids have T-Rex immune systems.  They don't get sick.  They're all budding Einsteins and Mensa candidates with exceptional neuromotor development.  Their vitamin D3 dose now is 50 to 100 IU per pound of body weight per day.  Fred, a.k.a., Winefred, now pushing seven, takes 2500 IU of vitamin D3/day vitamin D3 and brother Orrin, five takes 2000 IU/day.

lfXAUev.jpg

Fred & Orrin

 

B7UKD61.jpg

Emery Autumn, 3 1/2, takes 1000 IU/day vitamin D3

You should be taking this regimen too.

Take care and please keep us posted.

V/R, Batch

 

 

Edited by xxx
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