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Clusters changing sides? (Read 2973 times)
DannyUK
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Clusters changing sides?
Oct 10th, 2018 at 5:48pm
 
Question for the knowledgable... and the master Batch.
My brother who suffers from CCH has experienced pain behind his right eye for the past 6 months.
Now the seasons are changing (which is when he normally suffers most)... two days ago he was attacked with a headache behind his left eye.
Been following the D3 regimen for a long time and just started on the new Bio Tech D3.
I suppose the question is how does the weather/season change the side of the headache. And is there anything else can be done to stop it?
Thanks all
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Batch
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Re: Clusters changing sides?
Reply #1 - Oct 11th, 2018 at 9:22am
 
Hey Danny,

Great questions and good on you for switching to the Bio-Tech D3.  It's proving to be very effective for me.  Were you able to obtain the D3-5 (5,000 IU water soluble vitamin D3 capsules) there in the UK?

In response to your questions, a survey of 1134 CHers conducted by Dr. Todd Rozen in 2008 mostly from here at CH.com and Clusterbusters found the following on CH pain location:

Pain location
- 49.1% right-sided
- 44.1% left-sided
- 3.1% bilateral pain: CCH 8.3% vs ECH 1.5%.
- 30.5% stated that pain has changed sides since onset of CH
- 8% stated that pain shifted sides during an individual CH attack

At least two well constructed CH cohort studies did a meta-analysis of triggers and found a change in atmospheric pressure served as a CH trigger.

Have you started your brother on the anti-inflammatory regimen?

Take care and please keep us posted.

V/R, Batch
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DannyUK
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Re: Clusters changing sides?
Reply #2 - Oct 11th, 2018 at 3:11pm
 
Thanks for the detailed reply as always.
Found a seller on eBay here in the UK supplying the Bio Tech D3-50 (50,000iu) got them easily which was perfect.

That would make sense about changes in atmospheric pressure with the autumn just kicking in. It always seems to be the autumn time where he suffers the most.
Do you think the anti-inflammatory could help in this instance?
I will try to pick some up from the local chemist tomorrow so he can can started ASAP.
Recent blood test showed D3 levels of 210.2 nmol/L and headaches are a lot less frequent so maybe the anti inflammatory is the missing ingredient.

Thanks very much
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Nicolás
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Re: Clusters changing sides?
Reply #3 - Oct 11th, 2018 at 9:38pm
 
Hi Danny

I can tell you that, according to my own experience, it is possible to switch sides.

I was diagnosed CH in 2009 (it dated from several years back, but I always blamed my teeth or sinuses).

Until 2013, CH were always at the right side, but from then on, I've been switching sides with no evident pattern:

2013: right
2014: left
2015: right
2016: left
2017: left
2018: right

Up until now, I have no explanation for this...

Take care!
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AussieBrian
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Re: Clusters changing sides?
Reply #4 - Oct 11th, 2018 at 9:50pm
 
There's also the possibility of having more than one type of headache.  This is a bundle of fun but much more easily managed when you realise what's going on and can pick them apart.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Batch
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Re: Clusters changing sides?
Reply #5 - Oct 12th, 2018 at 2:12pm
 
Hey Danny,

Your 25(OH)D serum concentration at 210 nmol/L is right in the sweet spot 200 - 250 nmol/L for CHers to prevent their CH.  That said, if I was still getting hit, I would try to elevate my 25(OH)D serum concentration to at least 250 nmol/L (100 ng/mL) to see if that reduced the frequency of my CH even more or completely.

Before doing that I would also see my PCP for labs of my serum calcium and PTH.  As long as my serum calcium remained within its normal reference range and was not at its upper limit, that tells me I can safely increase my vitamin D3 daily intake.

As you're likely been taking the Bio-Tech D3-50 at one 50,000 IU vitamin D3 capsule every five days for an average of 10,000 IU/day, I would decrease the dosing interval to one capsule every 4 days (an average of 12,500 IU/day) to see the effect on CH frequency.  If there's a reduction in CH frequency but they're not eliminated completely, I'd reduce the dosing interval to one capsule every three days (an average of 16,666 IU/day) to see what happens.

Data from the online survey of 257 CHers taking the anti-inflammatory regimen indicate that as the 25(OH)D serum concentration increases, a greater percentage of CHers experience a favorable response.  This makes perfect sense as there's also a wide variation among CHers in their 25(OH)D response to 10,000 IU/day vitamin D3.  This variation ranges from a low of 60 ng/mL to a high of 192 ng/mL.  Bottom line... as long as serum calcium remains within its normal reference range and the CHer is still experiencing CH, more vitamin D3 may be better.

The big spoiler in all of this is an allergic reaction.  Allergic reactions trigger the body's mast cells to release large quantities of histamine which in turn triggers neurons to release Calcitonin Gene-Related Peptide (CGRP), Substance P (SP) and Vasoactive Intestinal Peptide (VIP), all of which contribute to the neurogenic inflammation and pain we know as CH. 

It gets worse...  CGRP in turn triggers mast cells to release even more histamine in a circular chemical chain reaction.  This ultimately results in what I call a CGRP cascade that makes nearly every CH intervention ineffective.  This can happen even with 25(OH)D serum conentrations as high as 180 ng/mL.   The best course of action in this case is a first-generation antihistamine like Diphenhydramine or Mepyramine.  You'll need to see your local chemist/pharmacist to obtain them.

These first-generation antihistamines cross the blood brain barrier to block histamine H1 receptors at the genetic layer and this helps stop the circular chemical chain reaction and in the process, enables vitamin D3 to down-regulate the expression of CGRP, SP and VIP to prevent our CH.

Hope all this makes sense.  Take care and please keep us posted.

V/R, Batch


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Mike NZ
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Re: Clusters changing sides?
Reply #6 - Oct 12th, 2018 at 3:33pm
 
CH changing sides has been discussed a few times over the years. Nobody has been able to figure out any impact from the change or meaning other than for some people who had a nerve block done on one side finding it sometimes just switched to the other side.

Do give D3 a go, it can mage a huge difference.
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DannyUK
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Re: Clusters changing sides?
Reply #7 - Oct 14th, 2018 at 10:36am
 
Yes that all makes sense thanks for the detailed reply.
Having only switched to the new D3-50 a week ago will decrease the interval to every few days to give a boost.

Now have some Diphenhydramine on hand as well from the chemist. If no real change in the next 2 weeks will start with a 7 day course with the anti histamine included.

Yes Mike have read dozens of threads on here where so many people have become pain free following the D3 regime. It’s so great to see and hopefully can achieve the same for my brother.

Thanks all
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DannyUK
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Re: Clusters changing sides?
Reply #8 - Oct 26th, 2018 at 11:01am
 
Little update for those interested.
After a few weeks on the new Bio Tech D3-50, while not pain free, my brother is reporting that any attacks are now much easier/quicker to abort with oxygen than before.
Attacks are still on the opposite side of the head compared to the previous 6 months but this isn't a big deal.

This is definitely a step in the right direction. Hopefully it continues to improve and will look closely to see if there is anythign else we can tweak.

Thanks
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Batch
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Re: Clusters changing sides?
Reply #9 - Oct 26th, 2018 at 3:12pm
 
Hey Danny,

Thanks for the update.  Be sure you and your brother ask for labs of your serum 25(OH)D, calcium and PTH after 30 days on the Bio-Tech D3-50.  Even your NHS will approve these lab tests if you tell your PCP you've been taking vitamin D3 up to 50,000 IU/day.

Take care and thanks again.

V/R, Batch
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