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Cluster Headache Help and Support >> Cluster Headache Specific >> High Dose Verapamil - Another Update
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Message started by Graemel on Dec 26th, 2019 at 3:35pm

Title: High Dose Verapamil - Another Update
Post by Graemel on Dec 26th, 2019 at 3:35pm
Hi guys all the best for the festive season! I have slowly whittled down the verapamil to 480mg per day. Not bad from a starting point of 1200mg per day. I have not used any abortives now for 12 days. Either tablet or injection. Still using D3. Still have fatigue plus some hand tremors but I am feeling more positive. Any ideas or support welcome.

Title: Re: High Dose Verapamil - Another Update
Post by Batch on Dec 26th, 2019 at 7:07pm
Hey Graemel,

Thanks for the update, If you're still experiencing CH while on the vitamin D3 regimen, your maintenance dose and resulting 25(OH)D3 serum concentration are likely too low. 

Data from the online survey of 313 CHers taking this regimen since December of 2011 indicate some CHers need vitamin D3 doses around 25,000 IU/day and higher to elevate their 25(OH)D3 to 120 ng/mL and higher to remain CH pain free.  For example, I've kept my 25(OH)D3 at an average of 150 ng/mL for the last year to remain CH pain free.

The simple way to test if you're in this category is to start loading vitamin D3 at 50,000 IU/day and stay at that dose until you've experienced a full 24 hours CH pain free.  At that point you taper the vitamin D3 dose down to a new initial vitamin D3 maintenance dose of 15,000 to 25,000 IU/day.

If you're still experiencing CH after 3 to 4 days of loading you may have an allergic reaction cooking away.  Allergic reactions trigger mast cells to release histamine and histamine to a CHer is like Kryptonite to Superman.  Histamine makes nearly all CH interventions less effective.  A week to 10 day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day should prevent allergic reactions from triggering your CH.  If there's no change in CH patterns after 4 to 5 days on Benadryl, discontinue as an allergy is unlikely.

Many CHers, (me included) have found taking the Bio-Tech D3-50 water soluble 50,000 IU capsule of vitamin D3 faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations.  You take one D3-50 a day as a loading dose and one D3-50 a week as the initial vitamin D3 maintenance dose. 

This form of vitamin D3 is also the least expensive.  One D3-50 50,000 IU capsule costs 22 cents, so one capsule/week works out to ~ 3 cents/day.  10,000 IU/day of the liquid softgel vitamin D3 runs 12 cents. You can do the math.

I would still continue the verapamil at the lower dose until you've been CH pain free for a few weeks as it does provide an additive effect in preventing CH.  At that point you can taper off the verapamil if desired.

It's best to see your PCP for lab tests of your serum 25(OH)D3, calcium and PTH 30 days after you start this loading schedule.  As long as your serum calcium remains in the green (within its normal reference range), there's no hypercalcemia (serum calcium too high) a.k.a., vitamin D3 intoxication/toxicity no matter how high your serum 25(OH)D3 goes.  We've several CHers (including me), who need to maintain their 25(OH)D3 over 150 ng/mL and one as high as 311 ng/mL to remain CH pain free and all have normal serum calcium levels.

Take care and please keep us posted.

V/R, Batch

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