Okay, so I'm trying to put together some "Cluster Headache Truths".   
I would appreciate ANYONE giving this a read and letting me know if I made any mistakes or missed anything.

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There are some truths when it comes to Cluster Headaches.

MOST CH sufferers are male.  MOST migraine sufferers are female.  Migraine sufferers need quiet, still and dark.  CH sufferers need activity!!!! 

Before I,  “knew anything” I could “metabolize” through an episode with VIGOROUS physical activity, which probably also took my mind off the pain.  Alternating cold and hot face splashes seemed to help

It is quite likely that CH is hereditary, but decades ago no one knew what they were.  After years of talking to friends and family, I am POSITIVE that my father had them---but they were not diagnosed back then.  He may have taken his own life during an episode.

MOST CH sufferers are current or former heavy smokers.  If you smoke, QUIT.  Chantix worked for me.  If you are suicidal or have nightmare, forget Chantix.  You are screwed.

Vitamin D levels are the real deal---have your D25 test done, particularly in winter when you are not getting a minimum of 15 minutes a day of short-sleeved sun.  Request a Test requires no doctor and cost under $30. Some advocates suggest a level of 80, others 50.  At least 50, in my opinion.  If it is down in the 30’s, you are deficient IF YOU ARE A CH SUFFERER.

Oxygen as an abort.  An anecdote: when I was “in cycle” a few sips of red wine would bring on a CH.  I was SO CONFIDENT in O2 as an abort I would swig red wine with ABSOLUTE CONFIDENCE that I could abort with oxygen, i.e., “bait the beast”.

Get on Oxygen as soon as you get a shadow.  Once a CH starts, time how long it takes to abort and stay on past that the same length of time to prevent rebound.

Most doctors know NOTHING about Cluster Headaches.

You need to suck down Oxygen at HYPERVENTILATION levels.  Strive to collapse the 3 liter bag with each inhale.

The D3 regimen is just that: a regimen, not just one vitamin.   Preferably take with an acidic beverage with the largest, highest fat content meal.

I hear people say, “Oxygen didn’t work for me”.  Perhaps, and obviously some things don’t work for everyone, and it might not be CH but a brain tumor, but I suspect that the O2 administration  was flawed.

Do not depend on your doctor or insurance company. If you cannot get prescribed O2, get it from any welding supplier (TSC, Harbor Freight, etc.). DO NOT TELL THEM WHY YOU ARE BUYING IT! If you do, they must refuse to sell it to you and you just screwed over everyone else.  You can say you weld, do metal sculpture, or need pure O2 to breed/hatch exotic fish---if they even care.

NONE of the serious meds prescribed were EVER developed for CH, but for migraines and other maladies.

Medical and welding O2 come out of the same wholesale liquid Oxygen tank.  Medical requires the tank to be flushed before filling.  Welding does not---but welding truly requires O2 every bit as pure as medical---ask a welder.  Blue versus green tank, and a different regulator fitting. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE has info on different fittings.


I suffered from episodic CH for 30 years.  NO doctor ever successfully diagnosed it.  A customer and friend watched me go into a CH, his father had them and he immediately knew what it was. Still, back then, over 30 years ago, that info was pretty useless since not a single doctor I went to knew what I was talking about.  More than one wanted to send me to a shrink.

This saved my life:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  And Charlie Batch.

I went to see a supposedly highly knowledgeable neurologist, a specialist in CH and he prescribed a lidocane nasal spray as an abort---more painful than the CH it was to abort, and prednisone as a prevent---a drug with HORRIBLE side effects.  I never took the pred---saved it to treat my old sled dog’s allergies and tossed the spray.

Having said that, a neurologist “should” be able to eliminate more serious issues, e.g., a brain tumor without drilling holes in your head.

Sadly, I believe some folks value the number of prescription drugs they are on. Just saying.

On June 1, 2009, I quit smoking.  That same year I got on START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE I started testing my D25.  That fall it was UNDER 30!  TWO WEEKS ON THE D3 REGIMEN AND IT WAS OVER 50!

There is a circadian rhythm to CH onset.  Mine were always May and October.

That same year I ordered my first Cluster Mask, regulator and welding Oxygen.  I got some CHs in late 2009 and early 2010, and the O2 stopped them in their tracks. Now I monitor D25 religiously; I do not take the D3 regimen year-round, only as required based on tests or shadows.

I’ve not had a CH in eight years.  As soon as I get that familiar “eye twitch” I check D25 and start D3 regimen.

Original “Monster Green” will slow the onset dramatically and allow you to get back to your O2.  Afrin spray may also help.

I was once excused from jury duty because I told the judge I needed my O2 tank close at hand.

Don’t scrimp on the mask.  The Cluster Mask is the best.  If some fool tells you that you can get a mask and bag for $5.00 instead of $25.00, ask yourself…really?

I still own three welding O2 tanks---one on each floor, in spite of no CH for years because, why temp fate?

And immediate administration of pure O2 dramatically increases your chance of surviving a heart attack with your brain intact.

Talk among yourselves!

Questions?  Comments?

Much of what you write is just so very true,  Jim,  and that bit about doctors knowing nothing about it should be carved in stone!

Perhaps one of your truths could do with a minor alteration, though  - "MOST CH sufferers are male.  MOST migraine sufferers are female."

I'd be inclined to suggest MANY CHeads are male and MANY migraine sufferers are female because our lady members get a bit touchy about this.  Fair enough, too, because for centuries they've been denied proper treatment because only us blokes get CH.

Otherwise it seems you have a great handle on this dread disease and are out there trying to help others.  I reckon this is a good thing and I'd love to have a drink with you sometime.

Full steam ahead and damn the torpedoes!

Brian down under.

Plus you can be male, get CH and get migraines (or female and that combo too).

Regarding the male to female ratio....the International Headache Society's criteria is often used to help with diagnosis. Over the years that ratio has changed from zero females to very rare to 10:1 to 4:1--now changed to 3:1. If you're interested in this, scroll down on the following page to "diagnostic criteria". START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

with the others above, I question the "Most" part of your CH/Migraine correlation. I believe a lot of women are improperly diagnosed and told they have migraine when it is really CH.

As to Welding ox as opposed to Medical ox, it is true they both come from the same tank and same supply line at the supplier. In fact, the same valve us frequently used to fill either. The biggest difference is chain of possession in medical O2. Welding O2 actually requires a higher grade of purity than does medical. The only reason we get 100% O2 for medical use is it is cheaper for the supplier to give us 100% than to put in a separate system in to produce a slightly lower O2 saturation. (Fortunately for us.)

The color of tanks varies depending on country and particular supplier, though medical ox is generally green. There is no difference in regulator fitting in large tanks. It is only when you go to an E tank or smaller that you have the bayonet type fitting.

jlc

I'm afraid I also have to quibble with your as to smoking. Yes, I agree smoking is bad for you, but there is a lot more evidence to support the theory CH'ers smoke in compensation for having CH than have CH because they smoke. CH is a neurological disease. Smoking is not. Minor point, but I know quite a few CH'ers who don't smoke and never have. (Myself included.)

jlc

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Carbon Monoxide in cigarette smoke is a vasodilator.  But, Nicotine can be a vasoconstrictor.  I've had a noted Neurologist tell me smoking and CH go hand in hand.

Great analysis. Smoking definitely increases the pain of each hit.

Jim, there may be some connection to smoking exacerbating CH, but causation is a different issue. That article is from 1999 when neurologists were almost all in agreement that women didn't get CH.

I'm not defending smoking. I just don't agree with medical community's kneejerk reaction to blame smoking for everything they can't explain. In 1999 the connection of CH and the hypothalamus had not been made, either.

jlc

Callico wrote on Mar 27^th, 2018 at 11:49pm:

Jim, there may be some connection to smoking exacerbating CH, but causation is a different issue. That article is from 1999 when neurologists were almost all in agreement that women didn't get CH. I'm not defending smoking. I just don't agree with medical community's kneejerk reaction to blame smoking for everything they can't explain. In 1999 the connection of CH and the hypothalamus had not been made, either.

The hypothalamus is strongly linked to CH although the mechanisms aren't fully understood. Similarly for addictions, including smoking, there are published research papers (look on PubMed to find them) linking addictions to the hypothalamus. So is is a reasonable hypothesis to link the two, making it more likely that if you have CH then you are more likely to have addictions, with smoking being a common linkage.

And of course there are plenty of people with CH who have never smoked (myself included). Stopping smoking doesn't seem to have a direct impact on CH, but smoking, especially later in life, can potentially limit the use of some medication used for CH.

There’s been great discussion on CH and cigarettes here over the years,  Jim,  and while we’ve never seen consensus  (nor would we expect to)  some really good ideas and opinions have come out of it.

Generally speaking,  Cheads are more likely to be smokers than are non-Cheads.  Many of us started smoking before the onset of this dread disease,  others after it began,  and many have never smoked at all.  Equally,  quitting seems to have little or no effect.

It appears our good old hypothalamus has much to do with addictive tendencies and an interesting point to come out of it all is that we ClusterHeads look to be more inclined towards addiction than the general populace,  be it cigarettes, alcohol, religion or the like. 

Someone suggested we have  “addictive personalities”  and I’m still not sure that’s actually a compliment.

a.)   Smoking causes CH,

b.)   CH causes smoking,

c.)   The same underlying factors lead toward both smoking and CH,  or

d.)   There is no relation at all.

It leaves me baffled along with those other great mysteries of our world  (Why do men have nipples?)  but the beauty of CH.com is that we can discuss such things.

The answer is out there,

Brian.

I'm male and have both chronic migraine and SUNCT/clusters. I can certainly attest to the fact that Migraines require dark and still (generally they make me sleep for many hours) while the others bring on an intense urge for activity and racing thoughts (where I wish I could sleep).

Having both come on at once is frustrating because I'm stuck in limbo. Half of my brain wants to lie in the dark the other half wants to punch the walls.

Hey Jim,

Great post!  Two comments... 

1. The health benefits gained from taking this regimen are too good to pass up so I tell CHers it's wise stay on it year round...  I've taken this regimen daily since I developed it in October of 2010... but then I'm a chronic CHer.   If I stop taking vitamin D3, the CH beast starts jumping ugly in as little as two days or two weeks depending on my serum 25(OH)D levels...  See the following VitaminDWiki link for a list of 86 good reasons to take vitamin D3 daily...

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2. Vitamin C is proving to be an essential part of the anti-inflammatory regimen for a lot of good reasons.  How much to take is a good question particularly as it's not toxic even at high doses...  For an otherwise healthy person, 4 to 6 grams/day (4,000 to 6,000 mg/day) is a reasonable dose...  If the CH beast is jumping ugly, 8 to 10 grams/day is a good minimum bogey... 

Dr. Linus Pauling took 18 grams of vitamin C a day and at age 92 commented...  "When I get older... I'll take even more."  He lived to the age of 93 and died of a misdiagnosed perforated stomach ulcer...  He was asked the same question... How much vitamin C should we take?  His answer...  "If you're still having colds... you're not taking enough."

I've taken 8 to 10 grams/day vitamin C for the last three years...  No colds...  My PCP just smiles when he debriefs me on the results of my annual physical labs...   I'm 73 and don't take any Rx medications...

The bottom line on vitamin C is simple... Humans, the great apes, simians, some bats, and guinea pigs lack the enzyme needed to synthesize vitamin C endogenously from simple sugars.  The rest of the animal kingdom make all the vitamin D3 they need...  One other factoid...  Only humans, the great apes, simians, some bats and guinea pigs have cardiovascular disease... the rest of the animal kingdom do not.  Hmmm...

Take care,

V/R, Batch

KDM wrote on Apr 4^th, 2018 at 10:35am:

Having both come on at once is frustrating because I'm stuck in limbo. Half of my brain wants to lie in the dark the other half wants to punch the walls.

Whilst I've not had that combination, I've had a migraine, tension and post-concussion headache all at the same time. It amazes neurologists when you can differentiate which is which and isolate out the symptom / location specific to each one at once.

But then I guess we become experts at our own headaches.

Mike NZ wrote on Apr 5^th, 2018 at 5:01am:

KDM wrote on Apr 4th, 2018 at 10:35am: Having both come on at once is frustrating because I'm stuck in limbo. Half of my brain wants to lie in the dark the other half wants to punch the walls. Whilst I've not had that combination, I've had a migraine, tension and post-concussion headache all at the same time. It amazes neurologists when you can differentiate which is which and isolate out the symptom / location specific to each one at once. But then I guess we become experts at our own headaches.

Well said, Mike. It's almost as if the separate H/A's are in individual compartments or at the very least, individual levels. Though I must say, when the CH gets ramping up hard, I tend to not notice the others. :-) With migraine, yes, I know the differences.

jlc

Mike NZ wrote on Apr 5^th, 2018 at 5:01am:

KDM wrote on Apr 4th, 2018 at 10:35am: Having both come on at once is frustrating because I'm stuck in limbo. Half of my brain wants to lie in the dark the other half wants to punch the walls. Whilst I've not had that combination, I've had a migraine, tension and post-concussion headache all at the same time. It amazes neurologists when you can differentiate which is which and isolate out the symptom / location specific to each one at once. But then I guess we become experts at our own headaches.

Agree with Jerry...well said Mike. Been my experience that physicains in general are stumped by patients that understand "more" than they do about their own bodies. Never could quite understand the consternation....ego?...training? obtuseness?.....dunno.

One of the few benes of being a clusterhead is that I am able to recognize things in and about my body that are not "normal"...sometimes it scares me...sometimes I am extremely grateful...and SOMETIMES the Doc listens...those are the good ones.....................