Hey TG,

Thanks for the feedback.  It's always good to hear the CH are gone no matter why.  Determining the efficacy of the anti-inflammatory regimen is a little more difficult for episodic CH'ers as it's easy to confuse a response to this regimen with end of cycle.

That said, the best indication of efficacy of this regimen will come when your usual episodic cycle time comes and goes without any CH.

Regarding magnesium supplements...  An RDA of 400 mg/day for men and 320 mg/day for women is a very safe bet for many reasons...

I've found the 400 mg/day magnesium essential for an effective 25(OH)D response to vitamin D3.  In addition, I've found hand and leg cramps another indication of insufficient magnesium while taking vitamin D3 at the doses we take to prevent CH. 

Calcium plays a role in muscle contraction and magnesium in muscle relaxation.  As vitamin D3 increases calcium kinetics, it's easy to get the serum calcium-magnesium ratio out of balance if you're not taking sufficient magnesium supplements.

There are also several studies indicating magnesium is essential for good heart health. 

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Take care.

V/R, Batch

Koctail,

Good question.  Some CH'ers who live in sunny climates think they develop sufficient cutainious vitamin D3 with resulting higher serum concentrations of 25(OH)D so wouldn't need to take supplemental vitamin D3. 

They're correct...  if they spend several hours a week out in the sun clad in a bathing suit without sun block. 

There are several studies of lifeguards at various sunny locations around the world and these studies found these lifeguards had an average 25(OH)D serum concentration around 60 ng/mL. At the same time, office workers at these locations averaged a 25(OH)D serum concentration around 45 ng/mL.

While 25(OH)D serum concentration in this range clearly meet the vitamin D3 endocrine requirements for healthy calcium homeostasis and bone health, as CH'ers, we need to maintain a therapeutic 25(OH)D serum concentration around 80 ng/mL or higher in order to support the autocrine (genetic expression) mode of vitamin D3 metabolism that prevents CH.

Bottom line...  It's much safer, a lot easier and far more effective to supplement with 10,000 IU/day vitamin D3 or more along with the vitamin D3 cofactors.

Take care,

V/R, Batch

TG,

If your lab test results for 25(OH)D were measured in ng/mL like your previous tests, all you need to do is drop to a maintenance dose of 10,000 IU/day vitamin D3.  What was your average daily intake of vitamin D3?  Howz the head?

A 25(OH)D serum concentration of 200 ng/mL is higher than needed to prevent CH.  I've been in contact with a handful of chronic CH'ers, refractory to other CH preventatives, who have been keeping their CH under control by maintaining their 25(OH)D in a range between 150 and 190 ng/mL under a physicians supervision with frequent lab tests for 25(OH)D, calcium and PTH (parathyroid hormone).

As the half-life of 25(OH)D is roughly two weeks, dropping your vitamin D3 intake to 10,000 IU/day should bring your 25(OH)D serum concentration down nicely over the next 30 days.  Try to get another lab test for 25(OH)D at that point.  Also ask for lab tests of your total serum calcium and PTH at that time.

Take care and please keep us posted.

V/R, Batch

Hey MJ,

Thanks for the feedback.  You and your wife made a wise decision getting her started on the anti-inflammatory regimen.  It appears you're wife is off to a good start and I wouldn't be surprised if she hasn't already started responding by now.

Regarding your questions:

1.  You wife can try to pick up another pred taper as an insurance policy, but I doubt her neurologist will prescribe a second taper so soon after the first pred taper.  If she's successful in obtaining another pred taper, have her hold off on starting it until she's given the anti-inflammatory regimen and vitamin D3 loading schedule at least 5 to 6 days to start working. 

Prednisone typically starts working as a transition preventative in less than 24 hours. 

If your wife hasn't experienced a significant reduction, (~70%), in the frequency, severity and duration of her CH or gone pain free after 5 to 6 days, she can start the pred taper if she was able to get it.

Prednisone is also an anti-inflammatory although it carries some onerous side effects if taken for too long.  We've had several CH'ers start the anti-inflammatory regimen while taking prednisone...  no problems noted...  That said, studies have shown prednisone can slow vitamin D3 metabolism...

2.  Regarding the 250 mg magnesium citrate tablets...  Get a pill splitter...  Most pharmacies carry them.  Magnesium is the most important vitamin D3 cofactor...  As such, 375 mg magnesium citrate is better than 250 mg...  unless the larger dose results in osmotic diarrhea.

3.  Oxygen Therapy.   If I was a licensed and practicing neurologist or headache specialist...  oxygen therapy would be my first abortive of choice while starting the anti-inflammatory regimen.  If used properly and soon enough... oxygen therapy with hyperventilation is nearly 100% effective in aborting CH. 

Given the neurologists your wife is seeing are obviously suffering from a loss of vision or haven't read any of the recent (2009 - 2011) survey data published by Dr. Todd Rozen, MD, FAAN, Director, Geisinger Neurosciences Institute Headache Center, Wilkes-Barre, PA, starting a new hobby using an oxy-acetylene welding system to do metal sculpting may be in order.

Dr. Rozen's survey data clearly indicates women suffer from CH...  "1134 individuals completed the survey (816 male, 318 female), 28% of CH sufferers are women... 868 patients had episodic CH (male:female ratio 2.9:1) while 266 had chronic CH (male:female ratio 1.8:1)..." 

An added suggestion...  You need to start this regimen as well...  The health benefits are hard to dismiss at 30 cents a day...  your brain, prostate, heart and basically your entire body will thank you for starting this regimen...

Take care and please keep us posted.

V/R, Batch

Hey CC,

Sorry you're still having a rough time.  Increasing the vitamin D3 loading dose for a few days should help cut the increase in the frequency of your CH and speed up the pain free response.

You may have a low arterial pH (too much acid) so starting the GOMBS diet is a good idea. A low arterial pH triggers vasodilation and that makes just about all CH medications less effective.  A GOMBS diet will help elevate a low arterial pH, increase serum alkalinity and this should make both oxygen therapy and the anti-inflammatory regimen more effective.

GOMBS stand for Greens, Onions, Mushrooms, Beans-Berries and Seeds & Nuts.  You can find some great GOMBS meals at the following links:

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Regarding your oxygen therapy...  I see why you're having trouble obtaining a fast abort of your CH and using so much oxygen...  Sucking on the oxygen tubing is part of the problem.  Your breathing technique is the other part.  You need to hyperventilate to make oxygen therapy more effective.

If you've had a home oxygen cylinder refill, here's the latest procedure and breathing technique you should try to abort your CH.  You'll need one of DJ's ClusterO2 kits from the CH.com store tab at the left of this screen.

I call this method Oxygen Therapy with Hyperventilation.   It essentially involves hyperventilating on room air at forced vital capacity tidal volumes for 30 seconds followed by a lung full of 100% oxygen that's held for another 30 seconds.

Remove the face mask from the ClusterO2 kit when you receive it as you'll be breathing directly from the 22 mm nipple on the green "T" manifold or mouthpiece as shown below.  You'll also need to adjust the oxygen regulator so it fills the 3 liter reservoir bag completely in one minute...

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You'll also need to cup the T-manifold exhaust port in the palm of your hand and press the open breathing port to your cheek or chin when not inhaling from it to keep oxygen from escaping and let the reservoir bag fill while you're hyperventilating with room air.

Start by standing to give your diaphragm full range of movement... This is important as standing during this procedure helps ventilate the lungs more completely.  Lean against a wall if you get dizzy while using this method of oxygen therapy.  If you get too dizzy, sit erect in a chair.

The next step is exhale forcibly through your mouth until if feels like your lungs are empty...  they're not!  Do an abdominal crunch like doing sit-ups and hold the squeeze until your exhaled breath makes a wheezing sound for a couple seconds.

It sounds terrible but it's a very important part of this method of aborting a CH with oxygen...  This forced exhalation breathing technique will squeeze out another half to a full liter of exhaled breath.  This last volume or end tidal flow of exhaled breath has the highest CO2 concentration and blowing off CO2 is the key to the effectiveness of this procedure.

Then without delay, throw your head and shoulders back and inhale room air as rapidly and deeply as possible until you can't inhale any more.

Again without any delay, use the forced exhalation technique.  Keep repeating this sequence as fast as possible with room air for 30 seconds.  You should be able to complete 10 of these complete cycles in 30 seconds.

At the end of the 30 seconds breathing with this technique, exhale forcibly one more time and hold the squeeze for a good 5 seconds...  Then place the ClusterO2 kit "T" manifold breathing port to your lips and inhale a lung full of 100% oxygen as rapidly as possible and hold it for 30 seconds. 

I know it's difficult, but try to relax at this point.  While you're waiting, place the breathing port on the ClusterO2 kit to your cheek or chin with the palm of your hand over the exhalation port to form a gas tight seal in order to inflate the reservoir bag for the next breath of oxygen.

If you're doing this breathing technique properly, you'll start feeling the symptoms of transient paresthesia and a slight dizziness...  These temporary symptoms of paresthesia include a very slight tingling/prickling of the face, lips, and fingertips.  You'll also experience a slight rush when you start holding the lungful of oxygen...  Paresthesia is the best indication you've pushed your body into respiratory alkalosis.

At the end of the 30 seconds holding the lungful of oxygen, exhale into the room with a good chest squeeze... then repeat the above sequence until the pain is completely gone... 

Be sure to practice this procedure for a few cycles before the cluster beast attacks...

If your start this procedure at the first sign of an approaching CH attack, you should be able to abort the attack in four minutes or less...  and with as little as 16 to 20 liters of oxygen...

If the CH hits while sleeping and is well established or rising, start this procedure as fast as possible.  It will work effectively through pain level 9, (Kip 9), it will just take longer.

The following chart from the pilot study of the demand valve method of oxygen therapy for rapid CH aborts illustrates the increase in abort times as the pain level increases.

Oxygen therapy combined with hyperventilating on room air is just as fast at aborting a CH and as effective as the demand valve method.  I'm a patent holder of the demand valve method of oxygen therapy so I've studied and used it extensively since 2007.  It also uses a lot less oxygen so it works very well with low flow rate oxygen regulators.

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While you're waiting for the ClusterO2 kit to arrive and if you're handy with DIY projects, you can build a Redneck Oxygen Reservoir Bag Breathing System.  They work great...

All you need is a clean 40 gal trash bag, the oxygen tubing from your old disposable oxygen mask, an empty plastic Coke or Juice bottle (with cap), some Duck tape and some electricians tape.  The following graphics should help in this DIY effort.

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Fill the Redneck Reservoir Bag ahead of time.  If you've constructed it properly, it should hold oxygen for a few days.

When the next CH hits, head for your redneck reservoir bag system and start hyperventilating at forced vital capacity tidal volumes for 30 seconds with room air.  As you approach 30 seconds make one more forced exhalation only hold the crunch/squeeze for a good 5 seconds.  While you doing this squeeze, unscrew the cap from the plastic bottle, inhale a lungful of 100% oxygen then replace the cap while you're holding the lungful of oxygen for 30 seconds.  Keep repeating this sequence until the CH pain is completely gone.  You'll be surprised at the lack of inhalation resistance sucking oxygen from the Redneck reservoir bag.

Take care and please keep me posted...

V/R, Batch