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123 Days PF And I Think I know Why (Read 441309 times)
Batch
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Re: 123 Days PF And I Think I know Why
Reply #2525 - Apr 4th, 2017 at 1:40pm
 
If we take Vitamin D3, we also need to take Vitamin K2.  This is a good topic that needs a little explanation.

Serum levels of vitamin vitamin D3, 25(OH)D3 and 1,25(OH)2D3 are primarily important in calcium homeostasis and building bone mineral density.  The serum concentration of 1,25(OH)2D3 is controlled by calcium homeostasis mechanisms that include chemo sensors in the parathyroids and kidneys. 

If serum calcium drops low within its normal reference range (8.5 to 10.5 mg/dL), the parathyroid glands sense this condition and start increasing the amount of PTH (Parathyroid Hormone) produced that in turn, enables the kidneys to hydroxylate 25(OH)D to 1,25(OH)2D3 the hormonally active form of vitamin D3. 

This serum level 1,25(OH)2D3 travels via the circulatory system to the gut where it picks up calcium to increase its concentration in the blood stream. 

As serum the calcium concentration rises approaching the upper limit of its normal reference range, the parathyroid glands detect this condition and stop releasing PTH.  This process is ongoing as long as we're alive.

This serum calcium is then added to the bones, used in many physiological processes throughout the body or dumped over the side in urine if there's too much.  If there's insufficient calcium from dietary sources in the gut, 1,25(OH)2D3 will take calcium from the skeletal system.

Before you get all excited... this happens all the time in a sequence of "Put" and "Take."  As long as the amount of calcium being put into the bones is greater than or equal to the amount of calcium being taken from the bones... all is well.  If more calcium is taken from the bones than put into them, we end up with osteoporosis.   Sooo... unless you've a diet high in calcium rich foods, it's a good idea to take at least 200 mg/day calcium supplement.

Where the Vitamin K2 menaquinones (MK4 and MK7) come into play is relatively new to medical science as studies of vitamin K2 have only began in the last 12 to 15 years.  The first study of vitamin K2 to be registered in clinicaltrials.gov occurred in 2005. 

Studies have shown that vitamin K2 increases the rate of bone accretion (building bone mineral density by adding calcium and phosphorus to the skeletal system).  As a part of this process, studies have also shown that vitamin K2 helps direct serum calcium away from soft tissues and arteries towards the skeletal system.

So... in simple terms, vitamin D3 pulls calcium from the gut then pushes it into the bloodstream and vitamin K2 acts like an epoxy catalyst causing the serum calcium to plate out in the bones.  Roughly 600 IU to 2000 IU/day vitamin D3 is needed to maintain bone mineral density.

To be clear, the above processes have very little to do with the mechanisms by which vitamin D3 prevents CH.  This is where vitamin D3 and 25(OH)D enter target cells throughout the body where both are hydroxylated to 1,25(OH)2D3 within the cells. 

In our case as CHers, the cells involved are neurons within the hypothalamus and trigeminal ganglia where molecules of 1,25(OH)2D3 join with molecules of retinoic acid (Vitamin A) to form a dimer (a two molecule polymer) that enter the cell nucleus and attache to target genes to enable genetic expression. 

Again in our case, to produce autocrine and paracrine signaling agents (peptides) that down regulate the production of CGRP, Substance P and other inflammatory agents that also stimulate pain and thus prevent CH and migraines.

There are no lab tests for cellular concentrations of vitamin D3, 25(OH)D3 or 1,25(OH)2D3.  The only way we know they're there within the target neurons in sufficient concentrations is good health and in our case as CHers... a cessation of CH symptoms.

For more on vitamin D3 and vitamin K2, see the following VitaminDWiki links:

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Take care,

V/R, Batch
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« Last Edit: Apr 6th, 2017 at 2:50am by Batch »  

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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2526 - Apr 4th, 2017 at 6:19pm
 
Hoppy,

here is a clear explanation of the role of vit K2 (MK7)

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Re: 123 Days PF And I Think I know Why
Reply #2527 - Apr 5th, 2017 at 12:39am
 
Smiley Thierry & Batch! For clearing that up for me.

Hoppy
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« Last Edit: Apr 5th, 2017 at 1:04am by Hoppy »  
 
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2528 - Apr 5th, 2017 at 5:04pm
 
Hey Batch,
another post by you that beats any article available as it goes beyond the simple explanations offered by such.
Thank you.
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Re: 123 Days PF And I Think I know Why
Reply #2529 - Apr 5th, 2017 at 7:04pm
 
Batch,

You've convinced me. I am going back to Costco to see if they have that Life Extension Super K.

You deserve a Nobel Prize or something for your research and willingness to share info and answer questions.

Regards,
Andrew
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« Last Edit: Apr 5th, 2017 at 7:12pm by aceserve »  

Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
 
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2530 - Apr 6th, 2017 at 3:24am
 
Hoppy, Thierry, Aceserve,

Thanks for the kind words...  but that post had a few typo's...  I need to use my reading cheaters more often as the Cadillac surgery that replaced a 72 year old clouded lens in my good eye with a new plastic lens is set for 20:20... at distance...

Ace, I've sent a letter to Costco asking them to start carrying the Super K, but I don't think they have done this yet.  In the mean time you can order the Super K from amazon.com.

I usually order four of the 90 count bottles of Super K for a year's supply.  At 20 cents per softgel capsule, this is the most expensive supplement in the anti-inflammatory regimen...  However, given all the benefits...  it's worth the expense for me.

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You can get a slightly lower cost per softgel at 17 cents with Now Foods Brand MK7.

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Take care and please keep us posted.

V/R, Batch
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« Last Edit: Apr 12th, 2017 at 4:13am by Batch »  

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Re: 123 Days PF And I Think I know Why
Reply #2531 - Apr 6th, 2017 at 11:13am
 
Thank you!
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Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
 
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2532 - Apr 12th, 2017 at 2:01am
 
Hi all,

Batch,
yesterday i dropped a sheet of plywood on my big toe, and silly me wasn't wearing steel toe cap shoes.
My toe is black and blue with bruising and may be broken, i cannot bend it.
Last night i got an attack and had to suck on the O2 for relief.
Any connection between the hurt toe and the CH attack? could my D3 reserves by sucked dry by the healing of the toe?

Many thanks

All the best
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Batch
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Re: 123 Days PF And I Think I know Why
Reply #2533 - Apr 12th, 2017 at 4:12am
 
Hey Thierry,

Occam's razor... When looking for a reason for an occurrence like this... the simpler reason is usually better.

In your case, the inflammation from the squershed big toe has likely depleted your serum concentrations of vitamin D3 and 25(OH)D.  The drop in vitamin D3 and 25(OH)D concentrations was obviously more than enough to open the door to let the CH beast start jumping ugly...

I'd take a 50,000 IU vitamin D3 loading dose for a couple days then up the maintenance dose to 20,000 IU/day until the toe turns pink again and toenail falls off... At that point you can drop back to your regular maintenance dose.  It's also a good idea to double the daily magnesium intake split am and pm while taking the vitamin D3 loading dose.

If the CH beast is still jumping ugly, drop another 50,000 IU vitamin D3 loading dose...

I have a dear friend and fellow CHer in Switzerland who had the same thing happen to him.  He was cruising along CH pain free taking 10,000 IU/day vitamin D3 when he broke his ankle during a takeoff run parasailing...

The swelling was so bad they wanted to wait a day or two for it to subside before surgery to pin the broken bones...  12 hours after the accident laying in the hospital bed, the CH beast started jumping ugly...  Fortunately there was an oxygen outlet next to his bed so he called for an oxygen mask and huffed and puffed on oxygen to blow away several headaches until his wife drove home and came back with his oxygen demand valve and a supply of vitamin D3 and the cofactors...  He and his wife had the hospital staff walking in circles over all this...

Take care... and don't forget the safety shoes...

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #2534 - Apr 12th, 2017 at 6:14pm
 
Hi Batch thank you for your reply.
Explanation understood and i have taken 50000iu D3 and will do so again tomorrow and maybe even another day as well as the extra dose of magnesium.
Keeping the O2 by the bed tonight again.

Buying the safety boots also!!! bit late hey, but better late than never.

All the best to you and yours
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« Last Edit: Apr 12th, 2017 at 6:33pm by thierry »  
 
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Re: 123 Days PF And I Think I know Why
Reply #2535 - Apr 17th, 2017 at 3:49pm
 
Update: 5 days/4 nights PF. I did another load day of 50k D# and take 25mg of Benadryl every 4 hours. I am sure it's overkill for the Benadryl but I am not tired from it any more so until the pollen dies down I believe I am going to stick with it. I also uppded my maintenance dose to 15k D3 for now. I have a test coming in the mail so I can update my numbers for you all.  I am about to go take a run which usually brings on a night time hit so here's to hoping I (we) got it figured out.

Take care and I'll be back with my numbers and update.
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Re: 123 Days PF And I Think I know Why
Reply #2536 - Apr 17th, 2017 at 7:26pm
 
Hey TG,

Good move... and glad to hear you've got the CH beast on the run...

The number of CHers who don't respond to this regimen is dropping.  The surveys submitted for 2016 indicate 93% of CHers starting this regimen are experiencing a significant reduction in the frequency, severity and duration of their CH in the first 30 days.  By significant we're seeing a reduction in frequency from an average of 3 CH/day down to 3 CH/week.  70% of CHers starting this regimen experience a complete cessation of CH symptoms in the first 30 days.

In talking with the non-responders to this regimen, it appears many would benefit with a higher maintenance dose of vitamin D3 with a corresponding higher serum 25(OH)D concentration above 100 ng/mL. 

Going this route requires close medical supervision from a physician who buys into this concept of higher vitamin D3 status and who is willing to order frequent labs for serum 25(OH)D, total calcium and PTH.

I met with a physician at the 20th Vitamin D Workshop in Orlando FL earlier this month who has been tracking patients taking 40,000 IU/day up to 60,000 IU/day for two to three years... Their serum calcium has remained within its normal reference range so no indication of vitamin D3 intoxication.  Of course their 25(OH)D labs are off the scale but their PTH stays low near the minimum reference range...

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 #2537 - Apr 18th, 2017 at 10:25pm
 
Batch wrote on Jan 25th, 2017 at 9:18am:
Hey Clustermom,

Great news your son is CH pain free.  I don't do facebook so I'm not sure what that group is putting out.  I've had a few CHers tell me the facebook group may not understand the importance of taking the cofactors.  Vitamin D3 is NOT a monotherapy.  Vitamin D3 cofactors must be taken when the vitamin D3 dose is ≥10,000.

If I were episodic, (I'm a chronic CHer so take this regimen daily/365) I would stay on this regimen year round.  That way I wouldn't need to guess when to ramp up my 25(OH)D in time for the next episodic cycle... that may decide to come early...

The health benefits of this regimen are so great I have my entire family and many friends taking it year round.  At 50 cents a day it is the least expensive insurance for a healthy life.

Take care and please keep us posted.

V/R, Batch


I was reading posts on Facebook today, a group called Cluster Headaches Exposed...it is so sad to read how many people are on there and have no clue how to deal with CH's.

Specifically those who state they are taking D3 and Calcium...or taking D3 and Magnesium...but very few appear to be knowledgeable about the co-factors with related dosages involved with this regimen.

Of course I posted a link to this website so they can hopefully educate and help themselves.  Wink

-Gregg in Las Vegas
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Re: 123 Days PF And I Think I know Why
Reply #2538 - May 14th, 2017 at 5:04am
 
It's funny you should say that as I have been thinking for some time now that there should be D3 Regimen page/group set up on Facebook. I have helped several people on there and steered them here from other CH groups who knew nothing about it. It really is the biggest platform available now and traffic to forums in general is steadily dropping off over time.

So, anyone fancy help setting one up, I would do it but don't feel qualified enough to go it alone, would be good if Batch got involved but I don't think he 'does' Facebook. Apart from the fact I know it works I don't know enough about the nitty gritty like Batch does.
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Re: 123 Days PF And I Think I know Why
Reply #2539 - Jun 3rd, 2017 at 11:29pm
 
4 1/2 years ago I was having CH bouts alternating months year round that lasted 4-5 weeks each. I started the vitamin D regimen  and have had 4 total cycles in that 4 1/2 years that lasted 3 weeks. Rather than 4-6 headaches a day it was 2 and the intensity was MUCH less and most of them aborted early on. I would slam a 12oz redbull at the onset and get on oxygen.... The combination works. If I had this therapy when I was in college I would probably have finished.

Thanks for everything!
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Re: 123 Days PF And I Think I know Why
Reply #2540 - Oct 8th, 2017 at 11:12pm
 
Bump
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Re: 123 Days PF And I Think I know Why
Reply #2541 - Oct 10th, 2017 at 8:23am
 
First of all thanks for such a in-depth regimen. I've read these forums for close to 9 years but haven't really posted.

A couple weeks ago started another cycle (2 year break). This is the 3rd Cycle I've had in 9 years and mine tend to last about 4-5 months. Started your D3 Regimen Saturday (4 days ago) but haven't had blood work completed yet. The only doctor locally that understands is booked until later this month.

I went from having a Kip 8/9 2-3x a night to now having a Kip 4/5 once a night. There is still a nagging shadow throughout the day but that normally subsides after half an energy drink. My nightly attacks are easily aborted with an energy drink or half an imitrex now also.

So thanks so much for the regimen and I hope it continues to work its wonders!

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Re: 123 Days PF And I Think I know Why
Reply #2542 - Oct 10th, 2017 at 10:11am
 
Hey Ksouthern81,

Thanks for the feedback.  Out of curiosity, are you using the latest version of this treatment protocol dated 15 Jan 2017 and did you use one of the vitamin D3 loading schedules?  If not you can download it from the VitaminDWiki.com website at the following link.  Just paste it in your browser.

CH Preventative Treatment Protocol for Neurologists - Jan 2017.pdf

I posted it there to keep track of the number of downloads.  So far readers at VitaminDWiki have downloaded 3550 copies since 21 Jan 2017.

The reason I'm asking is this version suggests a week to 10 day course of Benadryl (Diphenhydramine HCL).  It turns out that most of us CHers have allergies. These can be subclinical, i.e., no obvious or outward symptoms, but the allergic reaction is still there pumping out histamine.  If the level of histamine is high, none of the CH interventions will be effective, even vitamin D3.  Diphenhydramine is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain and in particular, the trigeminal ganglia. 

Histamine triggers neurons withing the trigeminal ganglia to release calcitonin gene-related peptides (CGRP).  CGRP is the onerous neuropeptide that triggers neurogenic inflammation and the pain we know as cluster headache.  By blocking the H1 histamine receptors, this limits or halts the release of CGRP and that allows vitamin D3 to do its thing through genetic expression to prevent CH.

25 mg of Benadryl (Diphenhydramine HCL) every four hours during the day and 50 mg at bed time should have you completely CH pain free the first night.  Just be careful and not drive after taking it as it will make you drowsy.   If you need to drive during the day, wait until you're home for the day then take a 25 mg tablet and 50 mg prior to bed.

When you've been on this regimen at least 30 days and have seen your PCP for the 25(OH)D lab test, please take the online survey at the following link when you have the time.  Data from this survey is important as I use it to update the survey results. Many neurologists will not suggest this regimen unless there's been a study that provides medical evidence of efficacy and safety.  The most recent version of the anti-inflammatory regimen CH preventative treatment protocol contains the results of this survey.

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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 #2543 - Oct 11th, 2017 at 7:52am
 
Thanks Batch,

I did download the latest version and I'm using the 2 week loading schedule. Due to my BMI (I need 100,000ui more) I will probably go 16 days before tapering to 10,000ui of D3.

I tried to take the 25mg of Childrens Benadryl throughout the day but it was like a tranquilizer, and trying to concentrate at work went out the window. I am taking 25mg at night however and I'll try to up this to 50mg tonight to test it out.

I'll be sure to take the survey as soon as I get to the doctor but my personal results so far seem promising.

Thanks again!

-Ksouthern
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Re: 123 Days PF And I Think I know Why
Reply #2544 - Oct 11th, 2017 at 1:09pm
 
Hi all,

My story, feel free to skip the next paragraph to get to my actual questions.

I've been having cluster headaches since my late teens, every year during the first week of November. They lasted about 4-6 weeks. Early thirties I went 20 months without one then it started in July and lasted 6-8 weeks. Been getting them every two years in July since then. Tried the D3 regimen in 2014 mid cycle and it didn't work for me. To be honest I wasn't very diligent because I wasn't sold on it. Tried again x2 weeks before my last scheduled cycle in July 2016 and it worked beautifully, not even a single shadow (That's over 3 years without an attack, awesome). I fell off a couple of months after the usual finish time with no issues. For whatever reason I had x2 attacks last night out of the blue. Not bad, maybe kip 3's. I've never started a cycle in early October before. C'est la vie. Anyways, today I'm rushing around trying to get all the required vitamins/minerals ordered to start the regimen again (along with oxygen) and i've a couple of questions.

I've downloaded the most current regimen (Jan. 2017)

- I'm curious if I should order the boron separately to get the optimum dosage?
- any particular brand of vitamin b50 I should get? (I skipped this step last time)
- I remember some talk regarding magnesium and diarrhoea and I'm wondering what type of magnesium would help prevent this while still being effective.
- should I start with antihistamines during the loading period just to eliminate any possible issues with the regimen being effective. Or hold off to see results first.

It's a big wall of words I know. I'm a little rattled right now. Thought I had a plan in place going into the future, but looks like my body has other ideas.
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Re: 123 Days PF And I Think I know Why
Reply #2545 - Oct 30th, 2017 at 11:04pm
 
More clues for those reading up on Allergic triggers and genetics, etc.
Batch, you'll be all over this...
Implications for CH???

EDIT: The 'complimentary' Full Article is provided from the ABC news site, so maybe go there first and use their link to Nature Genetics (in blue) to gain access to the full PDF.
I have VPN and can see it, not sure who can or cannot, but I can't download the PDF either...

Source (credited, not plagiarised):

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Full PDF:

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ABC news media:

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Abstract:

Shared genetic origin of asthma, hay fever and eczema elucidates allergic disease biology

Manuel A Ferreira,      Judith M Vonk,      Hansjörg Baurecht,      Ingo Marenholz,      Chao Tian,      Joshua D Hoffman,      Quinta Helmer,      Annika Tillander,      Vilhelmina Ullemar,      Jenny van Dongen,      Yi Lu, Franz Rüschendorf,      Jorge Esparza-Gordillo,      Chris W Medway,      Edward Mountjoy, Kimberley Burrows,      Oliver Hummel,      Sarah Grosche,      Ben M Brumpton,      John S Witte, Jouke-Jan Hottenga,      Gonneke Willemsen,      Jie Zheng,      Elke Rodríguez,      Melanie Hotze et al.

Nature Genetics (2017) doi:10.1038/ng.3985
Received 13 June 2017 Accepted 06 October 2017
Published online 30 October 2017


Asthma, hay fever (or allergic rhinitis) and eczema (or atopic dermatitis) often coexist in the same individuals1, partly because of a shared genetic origin2, 3, 4. To identify shared risk variants, we performed a genome-wide association study (GWAS; n = 360,838) of a broad allergic disease phenotype that considers the presence of any one of these three diseases. We identified 136 independent risk variants (P < 3 × 10−8), including 73 not previously reported, which implicate 132 nearby genes in allergic disease pathophysiology. Disease-specific effects were detected for only six variants, confirming that most represent shared risk factors. Tissue-specific heritability and biological process enrichment analyses suggest that shared risk variants influence lymphocyte-mediated immunity. Six target genes provide an opportunity for drug repositioning, while for 36 genes CpG methylation was found to influence transcription independently of genetic effects. Asthma, hay fever and eczema partly coexist because they share many genetic risk variants that dysregulate the expression of immune-related genes.

Article from ABC news:

Scientists identify genetic risk factors for asthma, hay fever and eczema

More than 100 genetic risk factors for asthma, hay fever and eczema have been identified in a new study that helps shed light on why these conditions often occur together.

The Australian-led study, published today in Nature Genetics, is the first of its kind to pinpoint genetic risk factors common to all three allergic conditions.

It has long been known that there are links between asthma, hay fever and eczema — someone who has one condition is likely to have others.

"We knew that the three diseases shared many genetic risk factors," said lead author Dr Manuel Ferreira of the QIMR Berghofer Medical Research Institute.

"What we didn't know was exactly where in the genome those shared genetic risk factors were located."

To find out, researchers analysed the genomes of more than 360,000 people and identified 136 positions in the genome that are risk factors for developing the three conditions.

"If you are unlucky and inherit these genetic risk factors from your parents, it will predispose you to all three allergic conditions," Dr Ferreira said.

"It doesn't mean you'll get all three, but you are at a higher risk of all three."

Genes affect immune system cells

The 136 genetic risk factors identified were found to influence whether 132 nearby genes were switched on or off.

"We think that these genes influence the risk of asthma, hay fever and eczema by affecting how the cells of the immune system work," Dr Ferreira said.

Immunologist professor Mimi Tang from the Murdoch Children's Research Institute said the research offered new insight into how gene variants can increase the risk of the dysregulated immune responses found in allergic diseases.

"There's always been a very strong association between these three conditions," she said.

"What this research has done has helped us to understand that the pathways driving these conditions might be similar."

Environment factors play a role

The study also looked at how environmental factors affect whether these genes are switched on or off.

"We found that this could be happening for many of the genes we identified," Dr Ferreira said.

"For example, we found one gene — called PITPNM2 — that is more likely to be switched off in people who smoke.

"If this gene is switched off, then the risk of developing allergies increases."

Professor Tang said this finding fits in with the current understanding of what causes allergic disease.

"It's a combination of one's genes and the environments that we're exposed to that determine expression of those genes," she said.

New clues for allergy treatment
By identifying genetic risk factors, researchers will be better able to understand which genes, when not working properly, cause allergic conditions, Dr Ferreira said.

"This knowledge helps us understand why allergies develop in the first place and, potentially, gives us new clues on how they could be prevented or treated," he said.

He said researchers had identified several drugs they believed could target some of the affected genes to treat allergies.

"The first step would be to test those drugs in the laboratory," Dr Ferreira said.

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« Last Edit: Oct 30th, 2017 at 11:09pm by N/A »  
 
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LasVegas
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Episodic CH since 11 yrs
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Re: 123 Days PF And I Think I know Why
Reply #2546 - Jan 29th, 2018 at 4:45pm
 
Bump
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Joseph BIG
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Re: 123 Days PF And I Think I know Why
Reply #2547 - Mar 24th, 2018 at 11:47am
 
Batch.

Are you still here my friend?

Just to inform the forum that from 22 years of age, every two years, I had the cycle coming for about 2 months.

My last cycle was in 2012. Having the Vitamin d3 taken every day according to batch....6 years of pain free!!!!

I did lowered the vitamin d3 to around 3000 a day.

The beast came again this month and it gets stronger!  Cry
I increased the vitamin d3 to 10,000 a day having also the omega 3 and calcium include boron and k2.

I am not sure about magnesium. I have never took magnesium.

I am home with oxygen.

Last night I had 10 attacks

I am kind of lost  Embarrassed

Batch....What do you suggest?
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Mike NZ
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Oxygen rocks! D3 too!


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Re: 123 Days PF And I Think I know Why
Reply #2548 - Mar 24th, 2018 at 4:27pm
 
Hi Joseph

Are you following the latest "recipe" - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It has a lot of guidance around what to do at various stages if it isn't working. I'd certainly include magnesium and it may need either more time for 10k iu of D3 to get you back to a pain free level or you can also potentially take more than 10k iu as loading doses (all in the link above).

Hope you're back to being CH pain free soon.

Out of interest, why the drop to 3k iu?
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thierry
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Re: 123 Days PF And I Think I know Why
Reply #2549 - Mar 24th, 2018 at 5:31pm
 
Hi Joseph,
take 10000iu D3 / day for a week to 10 days. and do take the magnesium. 400mg magnesium citrate. that should help
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