Hey Cupcakesprkls,

I know what you and your husband are going through with 8 to 10 CH attacks a day and as the guy who developed the anti-inflammatory regimen in December of 2010, I'm here to help, but I do need some answers:

Did your husband start this regimen with the 12-Day vitamin D3 loading schedule at 50,000 IU/day?  If not he can take 50,000 IU/day for another 6 to 7 days then drop back to an initial maintenance dose of 10,000 IU/day.  If he's a chronic CHer, he can continue the 50,000 IU/day loading doses for another 8 to 10 days.

If he did start the accelerated vitamin D3 loading schedule, relief could be a day or two away.  It's also possible your husband may have vitamin D3 absorption issues so have him pop at least 25,000 IU of vitamin D3 softgels between his back teeth then swirl the contents under his tongue without swallowing until the softgels dissolve completely. He can do this twice a day, particularly when he senses a CH approaching,

Is he taking the Omega-3 fish oil and ALL the vitamin D3 cofactors listed in this regimen?

How much Benadryl (Diphenhydramine HCL) is your husband taking?  25 mg every 4 hours throughout the day and at bedtime should be sufficient.  Many CHers have found Children's Benadryl Liquid Allergy medicine is just as effective taking 12.5 mg (5 mL in the measuring cap) every four hours.  Have him swirl this liquid under his tongue for 3 to 5 minutes without swallowing.  This sublingual method gets the Diphenydramine directly into the bloodstream a lot faster through the membranes under the tongue than swallowing. 

Did his neurologist write an Rx for oxygen therapy?  If not, call his office and have him phone in the script to the nearest home oxygen supplier in your area.  The Rx should be written as follows:

"Oxygen therapy at a flow rate of 15 liters/minute with non-rebreathing mask for Cluster Headache.  Use up to 12 times a day for 20 minutes or until the cluster headache abort."

If the Rx is not written this way, the home oxygen therapy people will assume the Rx is needed to treat COPD and blow you off...

Check the strength of the vitamin D3 soft gels to make sure they are at least 5,000 IU.

What other medications is your husband taking?  Does he have other medical conditions?

He also needs to drink 2.5 liters of water a day.  Have him check the color of his urine...  If it's yellow to dark yellow, he's dehydrated and needs more water.  If the urine is a pale straw color or nearly clear, he's drinking enough water.

When he senses an attack approaching, have him drink a glass of ice water (with lots of ice) through a straw.  The goal here is a mini-brain freeze that cools the sphenopalatine ganglia in the back of the nasal passage.  This cooling effect helps abort CH as it triggers vasoconstriction.

Placing an ice cube wrapped in a wet paper towel on top of the head just off center on the hit side on a line in front of the ear.  There's usually a sore spot in that area.  Place the ice cube there.  This tricks the body into thinking hypothermia is coming and this triggers vasoconstriction throughout the periphery including the brain in order to keep the core body temperature in the safe range.

Regarding the imitrex and going to the ER.  Most neurologist will say 200 mg/day is the maximum dose.  The problem with imitrex tablets is they take upwards of 30 to 45 minutes to start taking effect.  Imitrex nasal spray works a lot faster in aborting CH in as little as 10 to 15 minutes.  Have your husband ask for an Rx for the sumatriptan succinate nasal spray. 

What you can do in the mean time is pick up a pill splitter and cut the 100 mg tablets into four 25 mg quarters.  That way he can take 25 mg of imitrex up to 8 times a day...

Going to the ER is always an option and depending on the ER staff's experience in treating patients with CH, it can help.  Unfortunately CH is an orphan disorder so most physicians have never seen a patient with CH let alone treat one presenting with an active attack.  The best indication the ER staff knows their stuff is they'll start your husband on oxygen therapy at a flow rate of 15 liters/minute.  if they don't offer oxygen therapy as a first or second choice abortive... I would be skeptical...

Some other things to try that can help: 

Pick up some probiotic capsules and take as directed on the label until the bottle is gone.

Pick up some 1000 mg vitamin C tablets and take one tablet every 4 hours throughout the day and at bed time.

Pick up some Turmeric (Curcumin).  1000 mg/day should help.

Drink a half glass (4 ounces) of baking soda tonic 3 to 4 times a day.  You make it with a half teaspoon of good old Arm & Hammer Baking Soda in 4 ounces of water.  The directions are on the box.  The baking soda tonic helps elevate systemic pH making it more alkaline.  This helps reduce the neurogenic inflammation associated with a CH attack.

Diet can play a big role in CH...

No sugar of any kind and only one serving of fresh fruit a day.

No high carbohydrate starches (That includes no bread, pasta, wheat products etc.)

No corn or grain cooking oils or margarine.  EVOO, organic butter, avocado oil and coconut oil are OK.

Eat free range organic chicken and eggs, wild caught fish (salmon, halibut and cod), grass fed beef, NON-GMO green and yellow veggies.  Almonds make a good healthy snack.

The above should help.  Please keep me posted.
V/R, Batch

Hey Cupcakesprkls,

Thank you for the detailed response to my questions. You and your husband are doing all the right things so I expect it's just a matter of time at this point before he starts responding.  Did your husband happen to get the 25(OH)D lab test before starting this regimen? I also forgot to ask his age...  I'm 73 and I'm still a chronic CHer... All I have to do is stop taking vitamin D3 and I get slammed. Depending on my serum 25(OH)D concentration and allergy status, I can go up to six weeks or as little as two days before getting hit.

When we're vitamin D3 deficient and start taking vitamin D3 at pharmacological doses, cells and tissues throughout the body including the immune system, act like dehydrated compressed kitchen sponges.  They suck up vitamin D3 rapidly like sponges suck up water leaving too little vitamin D3 left in the bloodstream to help control CH...

What your husband is experiencing is what I call a Calcitonin Gene-Related Peptide (CGRP) Cascade.  This happens with CHers who are vitamin D3 deficient and sensitive to the slightest allergic reaction...  The UC indicates a compromised immune system and that adds fuel to the fire. 

An allergic reaction triggers mast cells to degranulate... essentially dumping large quantities of histamine into the bloodstream and surrounding tissues.  The histamine, in turn, triggers neurons within the trigeminal ganglia to express (generate) CGRP, SP and other neuroinflammatory peptides.  CGRP is responsible for the neurogenic inflammation and pain we know as cluster headache. 

When it reaches the bloodstream, CGRP triggers mast cells to release even more histamine creating a circular chain reaction.  That chain reaction continues until one or more of the chemical reactants are consumed at which point the chain reaction stops and cluster headache ends... for now...  As luck would have it, our bodies recharge the mast cells and neurons setting us up for another CGRP cascade in less than an hour or two. 

During a CGRP cascade, none of the mainstream CH interventions are effective.  This is why we need a first-generation antihistamine like Benadryl (Diphenhydramine HCL) as it crosses the blood brain barrier to block histamine H1 receptors at the genetic level within the trigeminal ganglia and elsewhere.  This helps prevent histamine from triggering the release of CGRP.

Benadryl (Diphenhydramine Hydrochloride) has a maximum dose of 300 mg/day so your husband can start taking 50 mg every 4 hours throughout the day and at bedtime.  Just make sure he doesn't drive or operate mechanical equipment as this much Benadryl will make him drowsy.

What your husband needs most at this point is oxygen therapy as a CH abortive.  If used properly, oxygen therapy can abort CH up to pain level 9 on the 10-Point Headache Pain scale in an average of 7 minutes...  That's a lot faster and less invasive than the sumatriptan succinate (imitrex) tablets.

You can call your husband's neurologist and request the Rx be faxed to the nearest home oxygen provider...  I wouldn't waste any time on your husband's PCP...  He needs some continuing medical education (CME) in patient handling skills as it appears his bedside manors suck badly.

If obtaining an Rx for medical oxygen from the neurologist falls into the "too hard" category, you or your husband can take up oxy-acetylene welding...  Welder's oxygen is just as pure as medical oxygen as both come from the same distillation process and frequently from the same tank of liquid oxygen at the cylinder fill facility.  Once you have the first cylinder, the cost of refills is about the same as medical oxygen.  I've had a cylinder of welder's O2 in my garage since 2010... and since we live in woods with logging equipment, I actually do some welding/brazing at times...

What's the nearest town/city to your home.  I'll check on availability and prices for a welder's oxygen cylinder.   The prices here in Bremerton, WA are ~ $200 for the first M-Sized (70 lb) oxygen cylinder and $35 for a fresh refilled cylinder when you drop off the first cylinder.  I keep my oxygen cylinder on a hand truck.  If 70 lbs is too much for your husband to lift, please let me know as there are smaller cylinders. A good CGA-540 15 liter/minute oxygen regulator can run from $35 up to $50 on Amazon.   I've a homemade Redneck Reservoir breathing system that I'll mail to you...  They work great and cost a couple dollars to make.

In closing for now... don't forget the baking soda tonic...  They can make a huge difference in lowering the frequency and intensity of CH.  Keep you husband drinking water...

I'll shoot you a PM with additional questions.  You access your PM inbox by clicking on the words in bold saying "You have

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under the greeting "Good Morning Cupcakesparkls" in the upper left corner of this screen.

Take care and please keep me posted...  I'm here to help.  V/R, Batch

"I will have him start the baking soda mix as well. He actually drinks almost nothing but water. He will usually have a vitamin water with dinner, and he has been drinking the coffee for caffine, and also been drinking a few red bulls when attacks come on."