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Hello from Chicago (Read 1807 times)
Genever
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Hello from Chicago
Oct 26th, 2017 at 1:05pm
 
Hello! I have been a lurker on this site for awhile, and am so lucky to have found it. I have been "officially" diagnosed with having atypical cluster headaches. Basically, I don't get them at night, and I don't have any pain free time during the day. I am always in some level of pain and it spikes several times throughout the day. I get them twice a year usually - spring and fall for 4-6 weeks. I am currently in a 2 month cycle - the longest I've ever had. I am on my second attempt at a Medrol 6 day taper while also loading on D3 and getting all of the other recommended supplements for the regimen. I just got O2 last week - very glad, although it took forever. I ordered my breathing mask from this site! I'm still trying to learn as much as possible from all of you. Honestly, this forum has been way more helpful than any doctor, and I've seen a LOT of doctors. I cannot say thank you enough to all of you for sharing your wisdom.
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MDR
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Re: Hello from Chicago
Reply #1 - Oct 26th, 2017 at 2:50pm
 
Welcome
and read as much as you can we are here to help

Mark.
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Batch
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Re: Hello from Chicago
Reply #2 - Oct 27th, 2017 at 4:56am
 
Hey Genever,

Let me second the welcome to CH.com and also welcome you to the anti-inflammatory regimen CH preventative treatment protocol.  Good on you for starting it.  The odds are in your favor this was a good decision you won't regret.

Results from the online survey of 215 CHers taking this regimen indicate the vitamin D3 loading schedule plays an important role in achieving a rapid and significant reduction in the frequency, severity and duration of their CH.  The 12-Day loading schedule taking 50,000 IU/day vitamin D3 for 12 days then drop back to a maintenance dose of 10,000 IU/day vitamin D3 appears to be the fastest way of elevating serum 25(OH)D to the therapeutic range capable of preventing our CH. This survey has been running continuously since December of 2011.

The actual reduction in frequency reported was from an average of 3 CH/day down to an average of 3 to 4 CH/week.  That means >82% of CHers starting this regimen achieve ≥ 75% reduction in the number of CH/week, > 70% in the first 30 days after start of regimen. CHers in this category report the few CH they do have are easily controlled with oxygen therapy and/or triptans.

One of the exciting findings from this survey is 54% of CHers starting this regimen report a complete cessation of CH symptoms in the first 30 days after start of regimen.

The efficacy of this regimen is made possible by taking vitamin D3 along withall the vitamin D3 cofactors and Omega-3 fish oil.  Among these cofactors, magnesium is the most important as it is essential in the metabolism of vitamin D3 to 25(OH)D, the metabolite we have measured in lab tests to determine our vitamin D3 status, and to the genetically active metabolite 1,25(OH)2D3, that's responsible for preventing our CH. 

1.25(OH)2D3 can also be measured in lab tests, but it's the concentration of this metabolite at the cellular level that's most important.  This concentration cannot be measured except by sophisticated lab tests not commercially available to us, but it can be measured in its therapeutic effect.  In our case as CHers, we measure it in how fast and completely it prevents our CH.

The other exciting finding from this survey deals with identifying one of the factors and mechanism of action that prevent up to 18% of CHers from achieving a favorable or pain free response to this regimen.  That factor is the presence of an allergic reaction caused when mast cells degranulate/release histamine in response to an insult by an allergen (pollen, mold spores, industrial chemicals, some foods, alcohol and many more). 

An allergic reaction can be sub-clinical, i.e., no obvious or outward symptoms, but it's still there generating histamine.  The histamine in turn, triggers neurons throughout the body, brain and in particular, the trigeminal ganglia where the inflammation and pain of CH occurs, to express and release calcitonin gene-related peptide (DGRP) and other neuroinflammatory compounds.

This reaction doesn't end there and actually gets worse.  The CGRP released into the surrounding tissues triggers mast cells to release even more histamine which triggers neurons to express and release even more CGRP.  This circular and self-sustaining chemical chain reaction results in what is called a CGRP cascade...

As CHers, we know this CGRP cascade as an uncontrollable CH and high pain-level "head banger" that doesn't respond well to any interventions if at all.  Even vitamin D3 and oxygen therapy become ineffective as do traditional preventatives like verapamil and the transitional preventative, prednisone. 

This self-sustaining, circular chemical chain reaction continues until one or more of the reactants are consumed and at that point. the chain reaction stops... and so does the CH...  for now...  Unfortunately, our bodies recharge the mast cells and our neurons take up the protein building blocks to make more CGRP so the pump is primed at that point for another chain reaction and CGRP cascade...  Sound familiar?

This is where a week to 10-day course of Benadryl (Diphenhydramine HCL) taken as a 25 mg tablet or 12.5 mg dose of Children's liquid Benadryl allergy medicine every 4 hours throughout the day and a double dose at bed time.

Diphenhydramine is a first-generation antihistamine that blocks H1 histamine receptors on genes within neurons and other cell types throughout the body.  It also crosses the blood brain barrier to block histamine receptors at the genetic level within neurons throughout the brain and in particular, the trigeminal ganglia where the pain of CH originates.  Second- and third generation (non-drowsy antihistamines) can't do this as readily so are less effective.  Once these H1 histamine receptors are blocked, this helps prevent the CGRP cascade...  and in the process, enables vitamin D3 to down-regulate the expression and release of CGRP preventing our CH.

Why am I sure this is what is happening?  I added Benadryl (Diphenhydramine HCL) to the anti-inflammatory regimen CH preventative treatment protocol in June of 2015.  Based on data from the online survey of CHers taking this regimen to prevent their CH, the average year-over-year efficacy of this treatment protocol between December of 1011 and December of 2015 was as follows:  80% of CHers starting this regimen achieved ≤75% reduction in the frequency of their CH, 70% within the first 30 days after start of regimen. 

In other words, CHers taking this regimen achieved a reduction in CH frequency from an average of 3 CH/day down to 3 to 4 CH/week.  54% of CHers starting this regimen experienced a complete cessation of CH symptoms in the first 30 days after start of regimen.

Here is part of the proof...  Survey data for CHers responding during 2016 indicate a significant improvement in the favorable response rate where 93% of CHers starting this regimen experienced ≥75% reduction in the frequency of their CH, 83% in the first 30 days after start of regimen and 73% achieved a complete cessation of CH symptoms in the first 30 days after start of regimen. 

Again, the only significant change to the treatment protocol was the addition of Benadryl (Diphenhydramine HCL). This increase in effectiveness could be due to other causes... Draw your own conclusions.

There are also several studies reporting an increase in CGRP serum concentration during the pain phase of CH and migraine headaches, but it was very low or undetectable during headache pain free periods.

In addition, if you follow the money, you'll find four big pharmaceutical companies are investing $100 million each in a race to FDA approval and market with monocolonal antibodies that have an appetite for CGRP...  as a migraine and CH preventative.

If you follow me this fare, it should be clear, Big Pharma and big money says controlling CGRP is a means of preventing CH and migraines.

Why are they doing this? If you thought Big Pharma really wanted to stop the suffering CHers and migraineurs go through…  you would be wrong… 

The answer to this question is simple… With > 12% of the US population suffering from migraine headache, (an estimated 36 million people), these four companies want another Humira (Adalimumab), the golden goose of monoclonal antibodies, costing $4370/month/treatment (2017) and earning $16 Billion a year (2016).

So here's the bottom line... See your PCP or neurologist and discuss this regimen. Take vitamin D3 along with all the vitamin D3 cofactors and Omega-3 fish oil.  Start the 12-day vitamin D3 loading schedule and if your CH patters haven't taken a turn for the better after 4 to 5 days of the loading schedule, start a week to 10-day course of Benadryl (Diphenhydramine HCL)  The tablet and liquid forms are equally effective.

When you hit the 30 day after start of regimen see your PCP for lab tests of your serum 25(OH)D, total calcium and PTH (Parathyroid Hormone).  If you haven't already done so, download a copy of this regimen from the following VitaminDWiki website. 

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

Take a copy of this treatment protocol for your PCP.  That way you'll both be singing from the same sheet music when the lab results come back.  Your 25(OH)D serum concentration should be 80 ±20 ng/mL, your total calcium should be within its normal reference range and your PTH should be in the lower third of its reference range.

Once you have the lab results in hand and have the time, please take the online survey at the following link: 

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

For reference, having lived with CH for over 22 years, chronic since 2004, I've learned the only thing consistent about CH is its inconsistency...  Most long-time CHers will say the same thing...  That makes "Atypical" CH par for the course.  Again, welcome to CH.com.

Take care and please keep us posted.

V/R, Batch
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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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Genever
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Re: Hello from Chicago
Reply #3 - Oct 27th, 2017 at 12:47pm
 
Thank you so so much Batch for everything you have shared about the D3 regimen. I cannot express my gratitude enough.

I was able to interrupt my cycle for about a week - by adding Benadryl! I noticed that when I would take it, I felt relief almost immediately. My mistake was that I stopped taking it once the headaches stopped. But, I know now that it can help if I take it correctly.

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Batch
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Re: Hello from Chicago
Reply #4 - Oct 28th, 2017 at 7:45am
 
Hey Genever,

Thanks for the feedback.  Benadryl (Diphenhydramine HCL) has been a game changer for many CHers taking the vitamin D3 regimen and still getting slammed...

I've found 12.5 mg of the Children's liquid Benadryl is just as effective as the 25 mg Benadryl tablets.  Like you said, it starts working rapidly...  I've used it to knock out shadows in less than 10 minutes if I hold it in my mouth for 3 to 4 minutes in a buccal or sublingual application.

You'll know when to taper off Benadryl when you reach the 5 hour mark after the last dose and still feel great.  At that point I increase the interval to 25 mg every 6 hours for a day, then every 8 hours 12 hours, then none.  If you're still CH PF 24 hours after the last dose of Benadryl, vitamin D3 has taken over the job of keeping you CH pain free... 

Keep the Benadryl handy as a new allergen can trigger another CGRP cascade...

Take care and please keep us posted.

V/R, Batch
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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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