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Cluster Headache Help and Support >> Cluster Headache Specific >> Well I think I now know the cause of CH. Yeh Right
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Message started by lancashire Lad on Feb 18th, 2018 at 8:04pm

Title: Well I think I now know the cause of CH. Yeh Right
Post by lancashire Lad on Feb 18th, 2018 at 8:04pm
No really, its simple and complicated at the same time and took a freaky incident to give me the clue.

More on that another time but I thought I would put it out here for the clever guys to have a go at and give the theory a pummeling.

CH is an Electrolyte Disorder that affects the pain processing signals. Normally the signals at kept in a band of volts and amps that the head is designed to work with.

The imbalance causes a signal to become too great and it overloads the system. Nothing there to attenuate it but time (exhaustion - resets the electrolyte balance to acceptable operating levels) unless you have a Rapid Relief remedy that works with your imbalance.

Oxygen is an almost universal Rapid Relief standby and its little wonder. Not just in the human body but Oxygen is well known in the outside (of our bodies) world of Engineering, Electronics, Chemistry and Physics for it usefulness in Electrolyte Management.

But when I started to look at the common Preventatives it became clear that I was on to something Each has a marked effect on Electrolytes within the body and then Vit D -Oh  Boy! what an Electrolyte ball player he his!

Seasons - temps, pressures even humidity have an adjusting factor on the Electrolytes within us.

If you have a dodgy Electrolyte management system and it goes pear shaped that's when you know about it.

Too big a current looping between the Brain stem and Hypothalamus causes the system to Overload (If it was an old telly or radio that's when smoke would appear and then flames).

If and it is a Big IF at the moment that this is the Cause then a Universal Cure / Preventative might not be too far away.

I'm putting this here first because of the help I got from some of you guys. It saved my life.

Best Wishes All

Peter

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by AussieBrian on Feb 18th, 2018 at 11:55pm
What?  Electrolytes??   All these years I've been blaming the Labor Government!!!

G'day Peter,  welcome back,  and your theory sounds fascinating.  Especially as it seems to work alongside so many of the therapies we now use to great effect.

I'm looking forward to the input of those here who know so much about this sort of thing so we can properly look at the science involved,  one way or the other.

Always great to know another CHead has got things under control,

Brian in Oz.

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by pattik on Feb 19th, 2018 at 2:15pm
Hi Peter,
I find your ideas quite interesting. Electrolytes are a part of many processes involved with CH abortives and preventatives. I've had quite a bit of success with the vitamin D3 regimen, and the most challenging part for me is getting the magnesium balance right.  It's not easily absorbed, and the other electrolytes need to be balanced accordingly to keep everything on track.  Calcium, potassium and sodium can get out of balance too. Lots of moving parts to make it all work. I'm looking forward to learning the freaky incident which got you thinking about this.

Patti

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by lancashire Lad on Feb 19th, 2018 at 4:53pm
Cheers Brian, lets hope we can nail the little bastard.

Hi Patti, yep the electrolyte balance is a tricky thing with so many co-dependencies /  interactions and reliant vital functions.

So a universal “cure” will not be an obvious conclusion but identifying the “cause” would be a great start.

Not everyone that has CH is likely to have the same imbalances (indeed this is borne out by the varying responses to treatments).

I will reveal below my “freaky” experience and how a particular electrolyte modifier had a partial (but very welcome) effect for me. Just to add a bit more mystery mine wasn’t “natural” CH but “artificial” (but hurt just the same).

Before the reveal I want to be clear on what I am suggesting and will use a simple analogy to describe the process of the CH tipping point.

This is not a description of how electrolytes work they are pretty complicated (out of the body) inside the body electrolytic processes are extremely complicated, not all electrolyte processes are fully understood.

……….

For this mind experiment we need a battery, bulb, a water bath (small plastic lunch box) two electrodes (cathode and anode if you like), water to nearly fill the water bath and wires to make the circuit.

Water conducts electricity (not well) but you don’t want to dry your hair using a mains hair-dryer when you are taking a bath or you might discover just how well water does conduct electricity.

Attach a wire to a terminal on the battery, the other end of wire attach to an electrode (metal stick). Attach another wire to the other terminal of the battery, the other end of the wire to a connection on the bulb, on the other connection of the bulb attach a wire which attaches to the 2nd electrode.

Place the electrodes in the water bath in close proximity so the bulb lights with a medium glow.

(If you touch the electrodes together the bulb will burn out (too high a current flow))

Now you get hold of two liquids A & B, these mimic a particular property of electrolytes (A increases current flow, B reduces it). Put away B (this is our cure)

With experiment set up and bulb glowing moderately pour in a bit of liquid “A” into the water bath. The bulb gets brighter, pour in a bit more and the bulb gets brighter still, keep on pouring the liquid until the bulb burns so bright it burns out.

……….

My freaky experience

I had neck pain (never properly diagnosed at the time but now seems to be associated with an enlarged aorta – going the wrong way to aortic thoracic aneurysm (the joys of getting older). Initially no pain was associated with the condition.

Went from bad neck pain L, to head L, to constant (24/7/365) L head pain centred behind eye but top of head & temple ( Classic HemiCrania Contiua). Then hello the little bastard turned up , 3 – 5 attacks a night, 20 – 80 minute duration, every night. And when he took a rest I just had to make do with the HC for company.

That was when I turned up here (pretty bad shape). Docs no good. Did get some advice from various quarters even had some email correspondence with Sjaastad.

Mine were clearly atypical cervicogenic (neck headaches), HC & CH episodes and like most, I was on my own.

Up to prescribable limits on a ton of meds with little or no effect except for feeling like shit and not knowing what day it was most of the time.

Did some research (out of desperation) found Indomethacin, asked the doc for it, did nothing for the HC but never had another CH from that day. So thought this is my lot in life, better get on with it, at least no CH but on top of other meds Indo makes shit feel shitter. Thing was the HC was getting worse.

About 3 months ago my options were to experiment with illegal psychotropic stuff or the other way.

Bad place!

Then my lower left molar filling fell out and the pain relief was immediate. A few days later HC gone entirely – (still got the neck pain)

My stupid, lazy, negligent thingy of a dentist had put in a metal filling (the size of a crown) without fully removing the old filling beneath it, which remains today shiny and silver.

The filling that came out was shiny and silver on the outside but underneath it was black and pitted (galvanic corrosion). The fuckwit (7+ years ago) had placed a small battery in my head and connected it to my maxillary nerve gaining access to my trigeminal network. Nice!

A constant, excessive, direct current into my pain processing systems with absolutely zero clue given in my tooth, never one twinge.

I had stopped going to the dentist not long after that (for check ups and the like) because I was unable to put my head back. I couldn’t put it forward either. Slept for the past 7 years sat up.

I felt no direct vengeance to the dentist at the time of discovering his slip up. I was going to go after his parents, wife and children first.

But this is what I have learned 1) Forgiveness is not easy for me.

2) Indomethacin (for me) can attenuate unusually high (unnatural) signal strength in the electrolytes in my pain processing circuits.

3) HC & CH symptoms can be artificially created by applying direct current into the trigeminal network.

4) Dentists are well insured.

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by Mike NZ on Feb 20th, 2018 at 2:50pm
Putting things simply, your body is a bundle of cells of different types, with each cell being essentially a cell membrane which surrounds a load of water with multiple dissolved ions and chemicals in it. With each biological process within the cell essentially being around either the movement of ions (e.g. calcium and potassium pumps across cell membranes) or the more complicated biochemical reactions like respiration (the ATP cycle).

An electrolyte is a chemical that when dissolved in water will disassociate (split) into ions, with a simple example being common salt (sodium chloride - NaCl) which will split into Na+ and Cl- ions.

Verapamil is probably the most commonly prescribed CH preventives and it is a calcium channel antagonist.

Nerve cells conduct impulses as electrical signals along their length by pumping ions in / out of cells.

So in essence, life if a series of biochemical reactions using water and electrolytes, so CH is naturally linked to electrolytes. And an electrolyte "inbalance" is saying that there is something wrong but then having CH is the result of something not being right.

But what is critical to understand with CH is why the balance is wrong in the first place. Is this the result of an incorrect gene expression (possible with there being a genetic link to some people getting CH), due to damage to the hypothalamus (some CH seems to be linked to head injuries) or something else like environmental factors? It is quite possible that there are multiple causes that can give the pattern of symptoms that are recognized as being CH (which might explain why some drugs work for some people and not others).

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by lancashire Lad on Feb 20th, 2018 at 4:27pm
“But what is critical to understand with CH is why the balance is wrong in the first place.”

Sure that would be ideal but not essential to tackle the problem. Correcting the imbalance must be the primary objective.

All mainstream CH meds have Electrolyte modifying properties in common. Not all targeting the same Electrolyte(s), not all exploiting the same processes.

What would be nice is a study of geographically dispersed typical CH sufferers and get their Electrolyte levels (in cycle and out) would be nicer. This info then charted with the individuals effective abortives and preventatives.

But this is some time away (if it happens). So a start would be for individuals to seek from their health care providers a comprehensive (as practical) Electrolyte profiling.

Google is pretty good at presenting info on which drugs affect which Electrolytes and the processes concerned.

A point to note is that adjusting one ingredient in the soup changes the whole soup, each ingredient is concomitant with the whole, they don’t function in isolation.

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by Mike NZ on Feb 20th, 2018 at 9:52pm

lancashire Lad wrote on Feb 20th, 2018 at 4:27pm:
Correcting the imbalance must be the primary objective.


Correcting an imbalance would be a preventive, fixing the cause of the imbalance would be a cure.

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by AussieBrian on Feb 20th, 2018 at 11:51pm

Mike NZ wrote on Feb 20th, 2018 at 9:52pm:

lancashire Lad wrote on Feb 20th, 2018 at 4:27pm:
Correcting the imbalance must be the primary objective.


Correcting an imbalance would be a preventive, fixing the cause of the imbalance would be a cure.



A cure would be beaut, no question, but another preventative certainly wouldn't go astray either.


Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by Hoppy on Feb 21st, 2018 at 12:44am
Electrolytes as a prevent, but not a cure.

Hoppy

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by lancashire Lad on Feb 21st, 2018 at 1:04pm
Only on here!

There will always be some that want to quibble about semantics. That's fine.

The condition to be cured is a headache. Modifying the electrolytes can and does remove the pain. Fact. The pain is stopped. The headache (if it doesn't come back) from the manipulation of the electrolytes can be said to be cured.

So what if the thing causing the original imbalance is still there when the imbalance is removed by intervention.

Do diabetics moan that nobody is working on getting their bodies to produce insulin when they are told their pancreas is fucked and will never work again. No they don't.

And as it happens the pancreas may well have a part to play in the CH electrolyte imbalance.

So what are you going to do when you find a fix for your CH electrolyte imbalance and no more headaches and you find out that the pancreas and some other organs were to blame?

Feel better?













Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by Hoppy on Feb 21st, 2018 at 11:27pm
Electrolytes "drugs" may prevent a CH, but stop taking them and as sure as god made little apples the beast will return, not a cure, their is no cure for CH's as of yet.

Hoppy

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by AubanBird on Mar 2nd, 2018 at 7:18pm
electrolytes are interesting to think about, but...

it leaves me wondering why a single dose of psychedelics can bring about relief for months or even years for some people, when the chemical itself breaks down so quickly in the body...

does anyone know of anything that those compounds either bind to or help metabolize, etc? 

that is the most curious part to me...  why does it have such a lasting effect?

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by Callico on Mar 6th, 2018 at 6:47pm
Interesting. I'm not smart enough to keep up with a lot of this, but what you are saying, Peter, makes a lot of sense.

A thought: Verapamil is the most commonly prescribed medicine for CH, often at very high, unsafe levels, that create other issues. BTDT -- still have the side effects 20 years later. One nice fringe benefit of Verapamil is Type II Diabetes. This does not prevent the pancreas from producing insulin, BUT it prevents the body from accepting insulin. My experience: put on very high doses of Verap -- develop diabetes -- go refractory chronic. Years later, I went on the Vit D3 regimen (at very high levels) and have achieved about 80% reduction in frequency and severity. Added 5 MeO DALT and achieved about 99% PF status. This seems to my simple way of thinking to correlate with your hypothesis.

I'll be watching this thread.

jlc

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by lancashire Lad on Mar 7th, 2018 at 8:16pm
Hi  Auban & Callico

Auban, research is patchy and not too helpful on psychedelics re pain /  analgesia but things are looking up real time mapping of brain stuff with MRI technology, it is opening new opportunities for research. Some ground breaking work is being done but the benefits to CH I’m guessing are some way off but now LSD research is being allowed again so things are moving in the right direction,

My research shows a disconnect between the affects of psychedelics re pain, and other “conventional” drug approaches. The results of messing with psychedelics (in pain research) are both amazing and as scary as hell. I can’t fit them in with my infant electrolyte research models but  this could just be because of the sparsity of studies and data (or my problem solving abilities aren’t up to this task – it won’t stop me trying though)

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Callico, even the experts find this stuff incredibly challenging but here is about as simple (whilst useful) as it gets guide to how nerves work. Page 1 to 9, any head scratching move on and re read later.
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Loads of stuff on Verapamil & Electrolytes on Google, basically you take verap and you mess with every cell in your body.

As it happens the guide above “how stuff works” mentions a particular phenomena that is of interest to me in my research page 5, bullet 5
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My theory is that too many volts get through to the signal processing plant and frazzles it, the volts should be cut off when they reach a limit but they are not, I believe this is when CH (and other HA’s) kick off.

Abortive electrolytes can kill this burn out, preventative electrolytes can make it less likely to happen.

It looks like you have found your recipe. If I were you I would stay on it full time but if you do take a break (out of cycle) it would be well worth you getting your Electrolyte profile recorded (over a period of time) and then when you get a hint of a visit from the little bastard get them done again before you start on your recipe. Those results could be extremely valuable to future research.

All the best

Peter.

Ps

Primary Headache is a stupid term and should be rechristened “We Don’t Know What Causes it Headache”

And Secondary Headache should be rechristened “We Think We Know What Causes it Headache”

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by lancashire Lad on Mar 7th, 2018 at 8:55pm
Here's a good presentation of how things works

My theory is taking me to look at the "Action Potential" and the possibility that max voltages  / currents are being exceeded.

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Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by shooky on Mar 31st, 2018 at 6:23pm
Many CHers were hospitalized in some point, and had their electrolytes tested. So I think an apparent CH-electrolyte connection would have to be figured out by now, if there was such a thing.

As for Verapamil - there is some evidence that it actually improves glucose tolerance and decreases glucose levels. So using it is more likely to prevent Type II diabetes.

Title: Re: Well I think I now know the cause of CH. Yeh Right
Post by Callico on Apr 3rd, 2018 at 8:14pm
Shooky, with respect, it is listed in the literature as a cause of Type II Diabetes. In low doses, perhaps it is beneficial to glucose over the short term, but long term, and high dose, not so much.

jlc

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