Owen,
Thanks for the kind words and great questions. It shouldn't come as a surprise that most old hand cluster headache sufferers (CHers), by the very nature of this disorder, have more detailed and first hand experience in treating it, what works... and what doesn't... than the neurologists who treat them.
Having said that, being treated by a neurologist who has seen two other CHers in 30 years practice is actually a plus... particularly if they're willing to work with you and are good listeners. A neurologist like this is actually ahead of the experience curve for general neurologists. Most general neurologists never see a CHer in an entire career... Hence the suggestion to fined a headache specialist.
Regarding a daily dose of 10,000 IU/day vitamin D3 as a maintenance dose or starting this regimen with a 12-Day accelerated vitamin D3 loading schedule at 50,000 IU/day for 12 days then dropping back to a vitamin D3 maintenance dose of 10,000 IU/day, the choice is up to you. The following chart illustrates the serum 25(OH)D response to both dosing schedules.
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Data from the online survey of 257 CHers taking this regimen indicate vitamin D3 passes through the blood brain barrier (BBB) to enter neurons throughout the brain and in particular, the trigeminal ganglia faster and at therapeutic concentrations than its first metabolite, 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D. The reason for this is quite simple once you understand the molecular chemistry involved.
The BBB is comprised of tightly packed endothelial cells that line the arteries and capillaries that pass through the central and peripheral nervous systems. It has windows that allow food, water, other nutrients like vitamins and minerals to enter the brain from the bloodstream and waste products to pass from the brain back into the bloodstream.
These windows have a size limit that admits molecules with a maximum size/mass of 400 Daltons (Da) or less. This size limit helps protect the brain from blood borne bacteria. The vitamin D3 molecule has a molecular mass of 385 Da so it passes through the BBB without too much trouble. 25(OH)D is larger by one hydroxyl molecule [OH] and it has a molecular mass of 400 Da so passes through the BBB only slower.
Once inside neurons, enzymes developed by magnesium, hydroxylate (add [OH] groups) to the vitamin D3 molecule at the 1st and 25th position giving us 1,25(OH)2D3, the genetically active metabolite. 1,25(OH)2D3 in turn, attaches to a vitamin D receptor (VDR) on a DNA strand and this initiates the genetic expression that helps prevent CH. We see the results of all this in the following chart illustrating the time to respond in days following start of the anti-inflammatory regimen.
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Regarding verapamil... all I can say is this... Most CHers who were taking it, then started the anti-inflammatory regimen and found it effective in reducing the frequency of their CH or stopping them completely... eventually stopped taking verapamil.
Regarding oxygen therapy as a CH abortive... After more than 25 years with CH, having a CH without oxygen therapy is like bleeding without a transfusion... If used properly with hyperventilation, oxygen therapy is 95% effective with average aborts running around 7 minutes as illustrated in the following graphic from a study I ran in 2008.
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7 minute aborts beats the heck out of an hour of agony...
Take care and please keep us posted.
V/R, Batch