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123 Days PF And I Think I know Why (Read 447185 times)
MiRose
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Re: 123 Days PF And I Think I know Why
Reply #2375 - Jan 4th, 2016 at 12:38am
 
Hello everyone!  I have a question.

During your cycle, is any part of your scalp numb? 

For me the right side of the top of my head going down to my temple was numb, feeling like it was sunburned.  I was out in the sun the day I first felt that, but then the next day I had my first cluster cycle.

The scalp numbness subsided in proportion to the cluster headaches subsiding.  Once I was pain free it went back to normal.

Is this a common occurrence with all CH suffers?
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2376 - Jan 4th, 2016 at 1:56am
 
Hey Rose,

Good question...  Cutaneous allodynia: Pain resulting from an innocuous stimulus to normal skin or scalp, (like pain from the slightest touch), paresthesia - a slight tingling or prickling sensation prior to an attack, and numbness in the pain area during and following an attack, are common symptoms of the cluster headache syndrome. 

In short... no biggie...  When your cycle is over or prevented with the anti-inflammatory regimen... these symptoms will go away.

Try to see your PCP or neurologist for the 25(OH)D lab test.  If either of them are resistant to your request for this lab test or they tell you it isn't covered by your medical insurance for CH, tell them you're concerned about osteoporosis after taking prednisone...  This lab test is covered for that disorder.

Take care and please keep us posted.

V/R, Batch
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B.Baer
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Re: 123 Days PF And I Think I know Why
Reply #2377 - Jan 8th, 2016 at 3:53pm
 
Batch,

Baer here, and thanks for all you do.

I've  had my D-3 levels checked this week. Results came back >60. 25 Hydroxy Vitamin D. My results from 7/19/13 were at >120.

I've been taking 50,0000 IU loading dose once a

week with 20,0000 IU's per day for weeks  prior to

having the blood test. Taking the Benadryl had no

effect. PCP, said blood work looked good otherwise,

and could see no obvious infection indications .  2012

was when I went into remission last cycle and I've

been Headache free for over three and one half

years. I would like to see my levels go up but can't

understand why they have not. I take all of the most

recent cofactors you've recently recommened to

DebPa, my wife. She has been posting for me but has

trouble logging on as of late. I await your response,

stumped at the moment. Some have been difficult to

abort with O2, and I've resorted to 2mg shots of

Trex at least once a day to extinquish the struborn

ones. I've had worse cycles and I'm about 2 and one

half months into this one. My last cycle lasted 3

months or so.

Thanks again and I really appreciate the input.

All the best,

Baer
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« Last Edit: Jan 8th, 2016 at 7:15pm by B.Baer »  
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Wayne
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Re: 123 Days PF And I Think I know Why
Reply #2378 - Jan 8th, 2016 at 8:22pm
 
Hello people, here i am again. Last time i popped in here i was full of the joys of life having been on D3 and PF for around 9 months i think. My PF time lasted a little over a year and then, for no reason at all, came to an abrupt end at the beginning of December. Since then I have been walking the walk we all know so annoyingly well, have kept up the D3 and cofactors, had the 25(OH)D levels checked and I should be fine. Yesterday I finally caved, pred taper and lithium here I come. Bah!
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2379 - Jan 9th, 2016 at 2:21pm
 
Hey Wayne,

Sorry to hear the CH beast decided to jump ugly on you...  Given it's summer down your way, you may be experiencing an allergic reaction...  An allergic reaction dumps a load of histamine into your system that triggers neurons in the hypothalamus and trigeminal ganglia to release calcitonin gene-related peptide (GCRP).  CGRP in turn triggers neurogenic inflammation and pain...  This chain reaction can blunt the anti-inflammatory regimen's CH preventative effect.

Taking a first-generation antihistamine like Benadry (Diphenhydramine) that passes through the blood brain barrier to block H1 histamine receptors will stop the histamine to CGRP chain reaction.  This will enable the anti-inflammatory regimen to do its thing in preventing your CH.  If you can't get Diphenhydramine, ask your chemist for a good first-generation antihistamine and take as directed.

A 25 mg tablet of Benadryl (Diphenhydramine) taken every 12 hours for a week or so should do the trick.  Most CH'ers respond to Benadryl in 24 to 36 hours.  If you haven't experienced a favorable change in your CH symptoms after a week, discontinue and start looking for an infection... 

Infections can compete for available vitamin D3, its metabolites and the enzymes need to hydroxylate them.  This leaves too little vitamin D3 and 25(OH)D to prevent your CH.

Take care and please keep us posted.

V/R, Batch
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Wayne
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Re: 123 Days PF And I Think I know Why
Reply #2380 - Jan 9th, 2016 at 2:46pm
 
Hey Batch, thank you for the feedback, I will get right onto it. We do have a pollen swarm here at the moment so maybe......?
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Re: 123 Days PF And I Think I know Why
Reply #2381 - Jan 9th, 2016 at 2:51pm
 
Wayne wrote on Jan 9th, 2016 at 2:46pm:
We do have a pollen swarm here at the moment so maybe......?


Quite possibly as this year the hay fever season has been a lot worse than most years here in NZ. Although I've not really noticed due to using the antihistamines.
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Wayne
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Re: 123 Days PF And I Think I know Why
Reply #2382 - Jan 9th, 2016 at 3:12pm
 
A quick question Batch, how important is it to take the whole regimen together in one dose, or can you split it up?
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2383 - Jan 9th, 2016 at 4:48pm
 
Wayne,

I take the entire regimen at one time more for convenience.  It's best to take the vitamin D3 and Omega-3 Fish Oil and magnesium with the largest meal of the day or at least with food.  This does two things... it lessens the incidence of GI tract disturbances and it aids in vitamin D3 absorption.  That said, you can take the vitamin D3 with the largest meal of the day and the rest whenever...

Hope this helps.

Take care and please keep us posted.

V/R, Batch
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2384 - Jan 9th, 2016 at 5:20pm
 
Hey Baer,

I suspect you've a couple things going on that are keeping the anti-inflammatory regimen from working properly to prevent your CH.

The first is vitamin D3 absorption.  If you're taking 20,000 + IU/day vitamin D3 and still haven't reached a therapeutic 25(OH)D level around 80 ng/mL, you may not be absorbing the vitamin D3 completely.  Try popping the vitamin D3 softgel capsules between your back teeth and swirling the contents under your tongue and keeping it there for at least 5 minutes without swallowing. 

This sublingual method of taking vitamin D3 enables it to pass directly into the bloodstream through the arteries and capillaries under the tongue.  This bypasses the GI tract and makes more of the vitamin D3 available much sooner.

It's taken five years, but I think we have a balanced formulation in the anti-inflammatory regimen that supports sufficient vitamin D3 metabolism for most CH'ers to prevent their CH... 

We're basically looking at a biochemical reaction where the reactants, (vitamin D3 and the cofactors: magnesium, zinc, boron and vitamin A (retinol)) are all consumed in the process of making not only 1,25(OH)2D3, calcitriol, the active hormonal metabolite of vitamin D3, but also the enzymes needed in vitamin D3 metabolism. 

As most of this reaction takes place extrarenal at the cellular level throughout the body and brain, all the reactants need to be present in the right amount.

Accordingly, adding more magnesium may be required.  If you're taking 400 mg/day, bump the dose to 800 mg/day, but split this to 400 mg in the AM and 400 mg in the PM.  This will lessen the probability of osmotic diarrhea. 

An allergy can still be a problem as some allergies are sub-clinical, i.e., no outward or obvious symptoms.  Try some Benardryl (Diphenhydramine).  A single 25 mg tablet every 12 hours should work just fine.  Just be careful if you need to drive, you will get drowsy.  If driving is a must, take two of the 25 mg Benadryl tablets when you get home for the day.

Take care, please keep us posted and don't get frustrated ... There are a couple other things we can try.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2385 - Jan 13th, 2016 at 7:02am
 
hello everyone,

The regimen has suddenly stopped working for me. started Dec 16 and it has successfully kept the beast away. but starting 4 days ago it has started to increase in severity with a kip 7 hitting me last night and this morning. im def. regressing.
the only thing i've done differently is travelled, switched from Solgar brand to Natural for the fish oil and multi vitamin and ran out of allerfin (similar to Benadryl) so i started using Diphelin and Chlorohistol (both Gen 1).

Im also getting nasal pain before and during the headache, more than I ever did before.

has anyone had this happen to him? any advise on what I could do to bring the effectiveness of the regimen back.?

thank you all!
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Mike NZ
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Re: 123 Days PF And I Think I know Why
Reply #2386 - Jan 14th, 2016 at 12:19am
 
Things I'd look at are:
  • Can you go back to a previous brand of fish oil?
  • Any allergies that could be affecting you?
  • Any infection?


Batch will no doubt have a few other ideas / suggestions.
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Re: 123 Days PF And I Think I know Why
Reply #2387 - Jan 14th, 2016 at 2:35am
 
Hello Mike,

Yes will go back to the Solgar fish oil today.
I have nasal allergies which Im taking Diphelin for (no benedryl were I live.)
as for infection, nothing I can point at. maybe ill go on a antibiotic course just in case.
Ill try anything.
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2388 - Jan 15th, 2016 at 12:06am
 
Rookie,

I'd hold off on the antibiotic for a while to give the other changes an opportunity to kick start the CH pain free response.

If you do try an antibiotic, be sure to pick up a good probiotic and take it at the same time to help rebuild the friendly colonies of bacteria that will be killed off by the antibiotic... Roughly 70% of our immune systems resides in and around the ecosystems of friendly colonies of biota in our GI tract called the microbiome...  In short, a happy gut is a healthy gut.

As you've been on travel, I'd start the probiotic anyway...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2389 - Jan 16th, 2016 at 11:27am
 
Hi Batch, i have a question regarding the D3 regimen, i tried searching through the thread but wasn't able to find anything related.

My doctor started me yesterday in a Verapamil, Methylprednisolone and Sodium Naproxen for 2 weeks to try to bust the cycle (im also taking gastric protectors for the Naproxen). I started the D3 regimen with Fish Oil, Magnesium and Zinc around a week ago and i assume im in the peak of my cycle as im having 7-8 Kip's at around 9 am and 3pm, usually i start with 3-4's at the beginning and end of my cycles.

The question is if these two regimes can coexist or if ill have to put the D3 away while i go with the chemicals?

Thank you for all you do
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2390 - Jan 16th, 2016 at 5:49pm
 
Hey Nevres,

Thanks for the headzup you've started the anti-inflammatory regimen and good question.  Good move!  Over the last five years we've found this regimen is compatible with just about all the CH medications prescribed as abortives and preventatives.  Some neurologists are concerned that calcium reduces verapamil's therapeutic effect as a preventative. 

That said, the most recent version of the anti-inflammatory regimen starts with a minimum of 220 mg/day calcium.  Separating the verapamil and calcium doses by 12 hours appears to optimize the benefits of both without detracting from the CH preventative function of verapamil. 

Accordingly, the short answer is keep taking the anti-inflammatory regimen.  It is the only thing addressing the cause of your CH.

Check your PM inbox.  I've sent some additional information.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2391 - Jan 20th, 2016 at 11:20pm
 
Hello, everybody! Batch!!  I haven't checked in in such a long time and am happy to see so many new people asking questions and starting on D3. Next month will be 2 years being totally pain-free since I started on the regimen. BATCH...I still cannot thank you enough for all you have done for me and continue to do for so many people. You have given new light to so many people who felt all hope was lost. You will always be a legend to me and I owe my new life to you. I will be reading in more often now.   I wish everyone else the very best of wishes and luck. We are all one family and no one here is ever alone. Pain-free wishes to all!!   Smiley

-Andy
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Re: 123 Days PF And I Think I know Why
Reply #2392 - Jan 21st, 2016 at 1:02am
 
Hey Andy,

Thank you for the wonderful update and kind words. It's comments like yours that do more to entice CH'ers to give this regimen a try than any of my long-winded posts. 

Aside from preventing my chronic CH, which like you, gave me back a quality of life I never thought possible with CH, this regimen has changed me as well. 

Reaching out to CH'ers with the anti-inflammatory regimen and capturing results like yours as well as from the online survey of CH'ers taking this regimen, has allowed me to observe many other benefits made possible by taking this regimen.  This has expanded my thinking into the benefits of taking this regimen to prevent and treat so many other medical conditions linked to a lack of vitamin D3.

Thank you again for the feedback and take care.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2393 - Jan 22nd, 2016 at 11:27am
 
Wanted to give you an update-I'm almost through the third week of my 6-8 week cycle, the 3rd and 4th week of the cycle are historically the worst. Last week was more intense, but still not as bad as cycles previous thanks to this regimen. I ended up increasing the fish oil, from 1 to four and adding Benadryl and the Indomethacin.  Went back down to a low pain/management level by Friday about maybe two hits a day, minimal and could be resolved with about 15 min of Oxgyen. 


This week,  I dropped down to 10,000 on Wednesday (Day 7 of week 2), and the hits the next morning were pretty intense. I resolved by going back up to 50,000 and feel great! Very small twinge this morning, but that's it.


The regimen is working for me, but it appears that I am having a hard time absorbing the Vitamin D without the benadryl and without a high dosage of the Vitamin D,  which would totally make sense based on some of the histamine issues I think I was having prior to this cluster cycle.  I had my Vitamin D levels checked on Tuesday, so I am waiting those results-should have them today.  I think i am going to continue the 50,000, unless my Vitamin D levels are super high.  I want to stop taking the Indomethacin, maybe over this weekend.  I just want to see if that is helping at all-if not, i'd rather not take it.  The side effects to the stomach lining seem to be no joke, based on what I have read. 

While this is working, I have also changed my diet dramatically.  Since this is an anti-inflammatory regimen, it only makes sense to not inflame my body further. So I am following an autoimmune paleo diet/low histamine diet.  I am also going to look at some digestive enzymes/l-glutamine to do some gut repair, in addition to my probiotic.  I have a theory that some of us that are having issues with absorbing the Vitamin D, may have issues with gut health overall (gluten, dairy, histamine intolerance, SIBO, etc.) 


Kids and hubby are on the vitamin regimen.  It feels so good to be doing something for all of us. 
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« Last Edit: Jan 22nd, 2016 at 4:49pm by mrsbenson03 »  
 
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Re: 123 Days PF And I Think I know Why
Reply #2394 - Jan 22nd, 2016 at 4:35pm
 
Hi Batch,
I was just wondering! You wrote, the most recent version of the anti-inflammatory regimen starts with a minimum of 220 mg/day calcium.  Separating the verapamil and calcium doses by 12 hours appears to optimize the benefits of both without detracting from the CH preventative function of verapamil.

How do folk that are taking verapamil 120mg 2-3 and 4 times a day and are on the vitamin D regimen separate the 220 mg/day calcium by 12hrs?

It's been 3yrs now since my last CH and I put it all down to the vitamin D regimen, so once again, thanq Batch! For giving me my life back.

Hoppy


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« Last Edit: Jan 22nd, 2016 at 7:28pm by Hoppy »  
 
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Re: 123 Days PF And I Think I know Why
Reply #2395 - Jan 23rd, 2016 at 9:39am
 
Hello Batch and everyone

well i held off on the antibiotics and verapamil. stuck with allerfin and been pain free for the past 7 days.
I believe not having the allerfin and relying on other antihistamines is what caused the relapse.

this is the 6th week of my cycle.

thanks batch and everyone for your guidance and help.
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Re: 123 Days PF And I Think I know Why
Reply #2396 - Jan 23rd, 2016 at 11:19am
 
Hey Rookie,

Thanks for the update and great news.  Some of the first-gen antihistamines come in different formulations...  The best advise is stick with the brand that works...  In other words... if it ain't broken... don't fix it.

And if someone claims they have a first-gen antihistamine that works better...

Recall that Admiral of the Fleet of the Soviet Union, Sergey Georgiyevich Gorshkov once commented on a new weapon system his engineers claimed was better than the existing system that had worked well without problems for many years...

"Better is the evil of good enough."

Take care,

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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Re: 123 Days PF And I Think I know Why
Reply #2397 - Jan 23rd, 2016 at 11:34am
 
mrsbenson03,

You're on the right track increasing your vitamin D3 dose along with some of the other supplements.  You should be able to run up to 40,000 IU/day vitamin D3 and stay there until your cycle is over...  Just be sure to drop back to a maintenance dose of 10,000 IU/day and to get the 25(OH)D, calcium and PTH lab tests. 

The 25(OH)D lab results will likely come back around 160 ng/mL and your PCP will go into fibrillation with anal leakage...  If he does, make sure he notes your serum calcium is within its normal reference range and PTH is low. 

It's not uncommon for CH'ers taking vitamin D3 doses ≥ 15,000 IU/day to have their serum calcium at the upper limit of the normal reference range...  All this means is calcium homeostaysis is working as advertised to keep serum calcium in range.

I would come off the Indomethacin asap...  All NSAIDs cause GI tract bleeds... Even the heart healthy 81 mg aspirin will cause bleeds.

Vitamin D3 and Omega-3 Fish Oil are just as effective in relieving pain and they have no adverse side effects... only favorable side effects...

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2398 - Jan 23rd, 2016 at 12:13pm
 
Hoppy,

Good question.  The pharmacokinetics of calcium and verapamil are similar.  They both need to dissolve in the GI tract, be absorbed into the bloodstream where enzymatic processes change the verapamil into a bioactive metabolite. 

As calcium is water soluble, it reaches a maximum serum concentration rapidly in 3 to 6 hours.  It also has a short half-life of ~ six hours as the kidneys filter it out and pump it over the side in urine rapidly.

When taken daily, the serum concentration of verapamil continues to build over several days to weeks until it reachs the point of equilibrium for the dose taken.  Dr. Heaney's chart below tells the same story with vitamin D3 as it would for verapamil.

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At some point prior to reaching an equilibrium for a given daily dose, the serum concentration of the verapamil metabolite reaches a therapeutic threshold... and "starts working" to produce the desired effect.

Taking all the verapamil at one time is just as effective in building serum concentrations of its metabolite as taking the total dose split up over the day.

Accordingly, separating the doses of each by 12 hours, gives verapamil and calcium an equal opportunity to do their biological thing without calcium adversely impacting the effectiveness of verapamil.

Hope that answers your question.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2399 - Jan 23rd, 2016 at 4:49pm
 
Batch wrote on Jan 23rd, 2016 at 12:13pm:
[size=18]Taking all the verapamil at one time is just as effective in building serum concentrations of its metabolite as taking the total dose split up over the day.



Batch...your posts always amaze, amuse, and/or inform... and I am proud and thankful to be in any group that includes you! I do have a comment/question about the above quote...(probably misunderstanding) and while I surely do not know anything about pharmacology from a science aspect... I am a long time subject of pharmacological effects.

Verapamil was a long term 70% effective med for me...at doses approaching 1000 mg/dy with surprisingly minimal negative side effects. Per my neuro... I took divided doses throughout the day. I  found the best effectiveness was to time the doses to approx. 90 min before my clockwork expected CH hits.

Loaded dosing...for ME...proved ineffective as I suspect the serum level went below therapeutic after
a period of time. Not to say the bolus effect is ineffectual...as I found timed doses best but SR (sustained release) version of the drug completely INEFFECTIVE...

I guess my point/question is...did you really mean to say that one time dosing is equivalent to divided dosing? At least in my case.... that was not the case...and I would suggest that folks using verapamil experiment with one time vs divided to see which works best for them. Cuz for CH folks....."we are all the same...and we are all different".

Best

Jon

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