Hello all my name is shaleem. I'm not a CH suffer but my wife is and her cycle has returned. I've been thinking and I've come up with something to consider If u already haven't. From the outside looking in it seems as CH has life. It doesn't behave like typical headaches. For some it's chronic and for most like my wife it's episodic. The come on suddenly and go away the same way. The pain is isolated to one side. From what I know it's not caused by any virus bacteria or fungus. Oxygen is the best treatment for it. Pain meds can't touch it. When u start to break down each factor of the whole u tend to come up with some interesting conclusions. One conclusion is that it's semi self caused. Like mind over matter. I say that cause meditation can help or something else. Remember I said CH seems to be alive. I need ur help and the only way to solve the CH MYSTERY Is with many people outside the medical community working over time to help the doctors find out a way to stop them. I think they are caused by a parasite of some sort affecting the brain stem or spinal cord. Looking forward to your input. Please the more ideas the better. No matter how crazy they seem to be

See the PDF file, below, for the currently used meds to prevent and treat Cluster. While Oxygen works quickly to abort an attack, other meds lasts longer--and a med to prevent/reduce attacks is essential.
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Headache:lessons learned from functional imaging
British Medical Bulletin 2003; 65: 223-234

Arne May
Department of Neurology, University of Regensburg, Regensburg, Germany

Using PET in a larger patient series, significant activations ascribable to the acute cluster headache were observed in the ipsilateral hypothalamic grey matter when compared to the headache-free state44. This highly significant activation was not seen in cluster headache patients out of the bout when compared to the patients experiencing an acute cluster headache attack45. In contrast to migraine25, no brainstem activation was found during the acute attack compared to the resting state. This is remarkable, as migraine and cluster headache are often discussed as related disorders and identical specific compounds, such as ergotamine and sumatriptan, are currently used in the acute treatment of both types of headache46. These data suggest that while primary headaches such as migraine and cluster headache may share a common pain pathway, the trigeminovascular innervation, the underlying pathogenesis differs significantly as might be inferred from the different patterns of presentation and responses to preventative agents46.
Just as it is striking that no brainstem activation occurs in contrast to acute migraine, no hypothalamic activation was seen in experimental pain induced by capsaicin injection into the forehead47. This is important because injection of the forehead would activate first (ophthalmic) division afferents which are the trigeminal division predominantly responsible for pain activation in cluster headache. Thus two other types of first division of trigeminal nerve pain, while sharing neuro-anatomical pathways with cluster headache, do not give rise to


VASCULAR HEADACHE: ARE BLOOD VESSELS INVOLVED?

Taking these observations on acute cluster headache together with what has been observed in experimental head-pain and migraine, the data establish that migraine and CLUSTER HEADACHE, FAR FROM BEING PRIMARILY VASCULAR DISORDERS, ARE CONDITIONS WHOSE GENESIS IS TO BE FOUND IN THE CENTRAL NERVOUS SYSTEM IN PACEMAKER OR CIRCADIAN REGIONS SPECIFIC TO THE SYNDROME. If further studies confirm these findings, a better understanding will be gained of where and how acute and preventative therapy can be targeted.
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Neurol Sci. 2013 May;34 Suppl 1:71-3.
Cluster headache: what has changed since 1999?
Leone M, Cecchini AP, Tullo V, Curone M, Di Fiore P, Bussone G.
SourceDepartment of Neurology, Headache Centre and Pain Neuromodulation Unit, C. Besta Neurological Institute and Foundation, Milan, Italy, leone.m@istituto-besta.it.

Abstract
The peripheral and central origin of pain in cluster headache (CH) and trigeminal autonomic cephalgias (TACs) has been matter of debate. In the last decade, a number of information came from both animal and human studies. This paper briefly highlights main data from these studies. Taken together, THERE IS NOW SUFFICIENT BODY OF EVIDENCE INDICATING THAT CH and TACs can be regarded as a unique headache spectrum-syndrome, DUE TO INVOLVEMENT OF SPECIFIC BRAIN AREAS.

PMID:23695050[PubMed

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shaleem,

Welcome to CH.com.  You've come to the right place...

Have your wife see her PCP for the 25(OH)D lab test and to discuss the contents of this post.  25(OH)D is the serum level metabolite of vitamin D3.  The normal reference range for this lab test is 30 to 100 ng/mL, (75 to 250 nmol/L).

Nearly every cluster headache sufferer (CH'er) with active CH who has gone in for this lab test has had their results come back indicating a vitamin D3 deficient, i.e., a 25(OH)D serum concentration less than 30 ng/mL, (75 nmol/L).

What is even more interesting is 83% of these CH'ers who start the anit-inflammatory regimen with at least 10,000 IU/day vitamin D3, 1000 mg/day Omega-3 Fish Oil and all the vitamin D3 cofactors: calcium, magnesium, boron and vitamin A (retinol), experience a significant reduction in the frequency, severity and duration of their CH.   75% of the CH'ers who start this regimen experience several pain free days/week and 60% remain completely pain free.

To put a number on the term "significant," CH'ers who start this regimen averaging 21 attacks/week drop to an average of 3 attacks/week for an 85% reduction in the frequency of their CH.

Accordingly, if you're looking for a theory on cluster headache...  I'd start with a vitamin D3 deficiency as the empirical data collected from more than 400 CH'ers since December of 2010 suggest a causal relationship between a vitamin D3 deficiency and cluster headaches.

Data from the online survey of CHe'rs taking the anti-inflammatory regimen indicated the following results:

106 of the 127 CH'ers (83%), who completed the survey questionnaire reported significant reductions in frequency, severity and duration of their CH.  75% reported 24-hour pain free responses and 60% reported remaining substantially PF.  Average starting 25(OH)D serum concentration reported was 23.4 ng/mL. 

The average 25(OH)D serum concentration response reported after ≥30 days or a favorable response to this regimen was 78.5 ng/mL.  This regimen appears equally effective for both ECH and CCH, although ECH'ers enjoy a slightly higher efficacy of 85% vs. 70% for CCH.  This may be due to the ECH’er confusing end of cycle with a favorable response.

A stress test of 25(OH)D reserves conducted after 13 mo. PF, resulted in a return of CH after 8 days without vitamin D3.  33% reported comorbidities. There were no major adverse events requiring medical intervention reported. 

This recurrence of CH symptoms coincides with the drop in the serum concentration of 25(OH)D as its half-life is roughly 15 days.

The bottom line is your wive is likely vitamin D3 deficient and that deficiency likely contributing to the frequency, severity and duration of her cluster headaches.

This regimen appears equally effective for episodic and chronic CH'ers.  This regimen is also >95% effective for Migraineurs in preventing their headaches.

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  The vitamin B 50 is not shown...  I buy these supplements at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the internet:

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Although this vitamin K complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 1:1 ratio.

Most CH'ers who have started this regimen in the last year and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day...  The accelerated vitamin D3 dosing schedule follows:

Have your wife take 10,000 IU/day vitamin D3, two of the Omega-3 Fish Oil liquid softgel capsules and one each of the remaining supplements the first day.

If there's no allergic reaction to these supplements (very rare), have her take 20,000 IU/day vitamin D3 for the next two weeks.  Keep taking two each of the Omega-3 Fish Oil capsules, and the rest of the vitamin D3 cofactors.

In addition, for the first two weeks take a 50,000 IU loading dose (ten of the 5,000 IU vitamin D3 softgels) once a week on top of the daily dose for two weeks.  The day of the loading dose you'll be taking a total of 70,000 IU vitamin D3.

After two weeks on above vitamin D3 dosing schedule, stop taking the once a week loading dose and lower your daily vitamin D3 intake to 15,000 IU/day. Continue at this dose for another two weeks then lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.

If you total the vitamin D3 doses your wife will be taking 600,000 IU vitamin D3 over the 4 week period.  This should elevate her 25(OH)D serum concentration by 60 ng/mL, (150 nmol/L) above her starting level.  Assuming that starting level was less than 30 ng/mL, (75 nmol/L), her serum concentration should be around 85 ng/mL, (212 nmol/L).

If your wife is like most of the other CH'ers who start this regimen, she'll experience a favorable response within the first two weeks.  Migraineurs sail through their usual cycle times with nary a twinge...

Finally, the anti-inflammatory regimen is a preventative and not a cure...

Take care and please feel free to ask questions.

V/R, Batch

I mean no disrespect but the thought of CH being "semi self caused" or "mind over matter" is ridiculous.  I can't tell you how angry it makes me when someone says "Maybe if you didn't worry about getting one, you wouldn't. "   

I hope that you and your wife visit here often and learn all that you  can to treat and manage her CH.  You may want to check out the thread "123 Days PF and I Think I Know Why."  Vitamin D3 has helped a lot of people including me.  It took a while for me to see the benefits but I'm really glad I stuck with it!

I'm with Jeannie on this.
Believe me, there is NO WAY I would do this to myself.
Maz.

Quote:

I think they are caused by a parasite of some sort affecting the brain stem or spinal cord.

Parasite? I don't think so.

I find it useful to keep in mind a bumper sticker floating aronnd my neighborhood:

"Just because I have a thought doesn't mean I have to believe it!"

Bob Johnson wrote on May 16^th, 2014 at 12:13pm:

I find it useful to keep in mind a bumper sticker floating aronnd my neighborhood: "Just because I have a thought doesn't mean I have to believe it!"

......or even say it......sheesh....I THOUGHT i had heard 'em all...my bad


one more piece of proof for "Pat's Theorem"......Pat, got your ears on? missing you......

There has been a great deal of research, multiple studies, sadly there is no definitive answer as to what causes CH but it leans pretty heavily towards a screwed up hypothalamus....here's a pretty in depth survey of over a thousand CHers trying to find our similarities, will help you to understand how many similarities we all share!

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Do have your wife try the D-3 regimen, 4 years pain free on it after well over 30 years of episodic.

Joe

Not sure about your theories, Shaleem, but I must admire that you are so supportive of your wife, you accept that sometimes she visits a hell on earth, and you're happy to seek some way, any way, to help her.

Good onya, mate.

AussieBrian wrote on May 17^th, 2014 at 5:01am:

Not sure about your theories, Shaleem, but I must admire that you are so supportive of your wife, you accept that sometimes she visits a hell on earth, and you're happy to seek some way, any way, to help her. Good onya, mate.

I completely agree, Brian.  I really do hope he comes back. There is so much help here.

I have recently started my 4th fight with these things in 5 years. My wife found this site and found information about the D3 system. I have started it 3 days ago. I know and have accepted that it will take a while for it to really show any progress but I am very optimistic of the long term outcome. I am so thankful to have found this site and all the wonderful people with some interesting and encouraging information. Thank you all!

CWF,

Good move starting the anti-inflammatory regimen...  The odds are clearly in your favor you'll experience a favorable response...  likely within the first week to 10 days.

Please keep us posted.

V/R, Batch