Hi, I'm new to the forum, but 30yrs + with ch.  This time is th worst!  I get hit at night every hour when trying to sleep, lying, sitting, kneeling over couch, anytime I fall asleep.  I am able to abort quickly most of the time but some break through, even during the day this goes on.

I am 68 yrs. old and in good physical condition otherwise and I thought the beast left you alone with getting old.

I am in second day of "batch" vitamin D3/calcium cycle stopper.   I also thought maybe I had PH type clusters and tried indomethacin for a couple of days, made it worse. 

Just wondering if any have experienced so many attacks per day... like 15 + or -.... I'm in 5th week, hope is passes soon as it has in the past.. thanks for any info..

Hey Fritz,

Good move starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3.  The odds are in your favor you'll be pleasantly surprised...

If you don't experience a favorable response in 5 days to a week after starting this regimen, you might want to try what other CH'ers have done... increase the vitamin D3 dose to 20,000 IU/day and add a 50,000 IU loading dose once a week. 

This dosing strategy should help build your 25(OH)D reserves a lot faster.  If you haven't been tested for 25(OH)D see your doctor next week to get tested... and discuss the anti-inflammatory regimen.

Cluster headaches also appear to be pH sensitive...  If the serum pH is too low (too much acid) cluster headaches tend to be more frequent and severe...

The simple solution to a low systemic pH is likely right in your kitchen cupboard...  Good old Arm & Hammer baking soda... 

Drink a half glass of cold water with a half teaspoon of baking soda 4 to 5 times a day (every two hours - two hours after eating) and just prior to bed time... 

This will akalize your system and that should help lower the frequency and severity of your CH...

Take care and please keep us posted.

V/R, Batch

Batch, thanks so much. As I mentioned, I'm only on 2nd dose D3. along with calcium 600mg and magnesium oil, omega 3.  Hoping for the best.

Had parathyroid surgery last year, high blood calcium.  I will check with my doc. next weeks,,  Nice person, almost ignorant about clusters..

Hi Fritz,
Sorry to read you suffering so frequently.  It is not surprising that your doctor is "almost ignorant about clusters" as most doctors need to be better educated about our rare disease.  Often the best education these doctors can receive is from us, the patient.  This website will provide you with most everything that has been helpful (and not) to those afflicted by CH's.  You of course will also receive plenty of emotional support from us, as we truly understand your pain and frustrations.

Last Fall I experienced a horrific cycle where I was getting tortured by the dragon on an hourly basis, at least 12X/daily for several weeks.  I tried the vitamin regimen you are referring to, took lab tests, found out my D levels were actually normal, spoke with Batch several times over the phone and in person to ensure I was following the vitamin regimen perfectly and I was, yet this vitamin regimen was not effective for my CH's in the least. 

After several weeks of suffering through 12x/daily attacks while hoping this vitamin regimen would be effective, I finally got tired of being a tortured guinea pig and got myself a Prednisone taper and began Verapamil; which immediately provided me with a reduction in frequency and intensity of attacks, followed by an end to my episodic cycle.


I clearly understand the value of this vitamin regimen as general health benefits on or off cycle, year round; but for me it was not worth the continued gamble of my pain nor my frustrations whether or not the vitamins would eventually help, so I went to traditional meds I knew worked for me in previous cycles and they did help.

"To each his own", that's my 2 cents, good luck. ;)

-Gregg in Las Vegas

PS  Do you have o2?  Ever try an energy drink such as Redbull?  Imitrex injection?

I did the prednesone taper, plus another steroid (name escapes me).  My last cycle was in '09, never this bad before.  They usually last 5 -6 weeks with ONLY 4 or 5 hits a day,,seems like a piece of cake now !

Sure makes ya appreciate the good days.  Just days before this cycle, I put a roof on my house (alone) and helped my son do his, plus biking 25mi. most every day.. Now I'm a prisoner in my house.   I just keep hoping and praying and knowing this will stop.  Thankful for the forum and support and going to stick with Batch until it works or not.. Thanks again for encouragement.. Fritz

Fritz wrote on Oct 20^th, 2012 at 1:51pm:

Had parathyroid surgery last year, high blood calcium.

It's possible the parathyroid surgery may be responsible for the higher frequency and severity of your CH if there was insufficient parathyroid tissue left following the surgery...

Our bodies run on daisy chains and bucket brigades of hormones and enzymes to keep it running properly...  Remove one of the hormones like the parathyroid hormone (PTH)... and some of these daisy chain processes break down...

The PTH is a classic example.  It stimulates the metabolism of 25(OH)D in the kidneys into its active hormonal form, 1,25(OH)2D3 (calcitriol).  Without PTH, the kidneys just pump 25(OH)D over the side in urine as an inactive metabolite...

Calcitriol is the vitamin D3 metabolite and active hormone responsible for pulling calcium from the bones and gut in order to maintain normal serum calcium levels...  We think this hormone also plays a role in preventing cluster headaches.

We all come with four parathyroid glands as shown in the graphic below:
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Recent advances in minimally invasive parathryroidectomy surgical procedures attempt to leave as many of the healthy parathyroid glands as possible.

Question...  After your parathyroidectomy (removal of the offending parathyroid gland), have you been able to maintain normal PTH levels?

If so, the anti-inflammatory regimen should prove effective in helping to prevent your cluster headaches.

If not, you may want to talk with your doctor or endocrinologist about an Rx for calcitriol.

Metabolism of 25(OH)D also takes place peripherally throughout the body in the presence of vitamin A (retinol).  Dr. Robert Heaney, MD has a fascinating presentation on the peripheral mode or path of vitamin D3 metabolism at the following link:

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After watching this video, you may want to add some vitamin A.  I take a tablet of Centrum Silver a day...  It contains sufficient vitamin A and vitamin K.

Take care and please keep us posted.

V/R, Batch

Batch... pth levels have been normal and calcium blood within normal range, although at the high end.  Also diagnosed with osteopenia, DISH arthritis plus 4 yrs. ago, radical prostectomy, stage 111.. been clear since.   Other than that, I'm just great.

Note of interest.  My neighbor, 60ish lady told me her doc. has her do 50,000iu D3 a week for her arthritis..