Hi All,

I had these CH's for 10-15 years, but just found this board.  Been on Verapamil for ch & high blood pressure for that long too.  My wife just found this board and the information on here is amazing...I had no idea this was fairly common.

Had a 3-hour ch the night before last (longest ever I think) so I thought I would try the energy drink thing and bought a couple.  Yesterday it started late afternoon and i slammed a monster and it was definitly less intense.

I've never tried any methods or regimines to try to help these.  The last time I've had these had to be 2 ish years ago so it is not often.  I thought maybe my doc could increase my verapamil dosage, but when I called him he said I was at the max and that I should try "self care"...what?!

I would really like to try some different things to lessen these so I here are a few questions from a newbie:
- the d3 regimine?  could you explain?
- fish oil? how much
- are any energy drinks better than others?  drink just at the onset of pain or as a daily ritual in the morning?
-  any other tips would be greatly appreciated

Oh, I'm a 45 yr old male from Wisconsin if that matters.

Hello, and welcome to the board. Here's a few suggestions to get you started:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Others will chime in on the D3 regimen. Good luck and God bless. lance

Hey PT,

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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The best guidance as the link above states, is see your PCP or neurologist to discuss this regimen as a preventive for your CH and to ask for the lab test of your 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status. 

The normal reference range for 25(OH)D is 30 to 100 ng/mL but we CH'ers need to keep our 25(OH)D up in a range between 60 and 110 ng/mL in order to experience a sustained pain free response...

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the internet:

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Not shown in this photo is the Centrum Silver or similar formulations that provide vitamin A and vitamin K2.

I've also added a vitamin K supplement called Super K with Advanced K2 Complex made by the Life Extension Foundation (LEF).

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Although this vitamin K complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take. 

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 1:1 ratio.

Hope this helps.

Take care,

V/R, Batch

The odds are that you have Cluster BUT there are many disorders which mimic Cluster, some of which are serious.

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

So, a major argument for working with a good doc.

Second, IF Cluster, you will be dealing with a disorder which will likely continue for another30-years before tapering off. There is no cure but there is very good control. But not a self-diagnosis, self-treatment issue.

So, if at all possible:

LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Hi and welcome

With you having a 3 hour CH it very much sounds like you've got nothing to abort a CH when one arrives. Oxygen is one amazing way to kill a CH using a non-rebreather mask and a high flow rate. I can kill mine off in about 5 minutes, which means missing out on a whole lot of pain (I don't miss the 45-75 minute torture sessions I had before oxygen).

Read up more about oxygen at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Imitrex injections are another option, but expensive (depends on your insurance) and you are limited to how many a day you can use.

You should not need to go through a CH with nothing to kill it off. If your doctor doesn't set you up with an abortive get another one who will.

For verapamil many people will get relief at between 360-480mg a day although some need to go to 1000mg. These are huge doses compared to when verapamil is used to control blood pressure, which is why many doctors are reluctant to use these doses. But depending on your own medical history there may be reasons why you cannot use these higher doses. Always work with your doctor when changing doses.

For energy drinks just look for ones containing caffeine and taurine. It seems that the mixture of the two is what makes a difference. Different brands are more down to taste and cost, although it took me over a year to even work out that Red Bull isn't red. Just skull it down rapidly at the start of a CH for best effect.

Keep reading and you'll learn lots here. Ask all the questions you have too.

First of all this website is great and there is a wealth of information.  After reading many posts I realize I have a very minor case of CH...although they hurt like heck, I think the amount of them I have been getting (1/day) is less than many others.

After a week of battling, I needed to try something so I started the d3 and fish oil.  I began this on Saturday and since then there has only been 2 times where I felt I needed to slam an energy drink...and at no point has it gotten worse than a 3 or 4.  Is this normal?  Should I be counting my lucky stars?  Or is it building for a biggie??  Has anyone else experienced quick relief from D3/fish oil or is this a coincidence?

Hey PT,

Thanks for the update.  If all the data we've collected on the results from taking the anti-inflammatory regimen over the last three years are any indication, the frequency and severity of your CH will continue to decrease until you're pain free.

The important thing at that point is to continue taking this regimen year-round... and see your PCP for the lab test for your 25(OH)D.  10,000 IU/day vitamin D3 should result in a stable 25(OH)D serum concentration around 80 to 85 ng/mL after 3 to 4 months.

Take care and please keep us posted.

V/R, Batch

Hi PT
If you are feeling less pain then by all means count your lucky stars. What ever the reason, it's great to be pain free. But don't count your chickens just yet.
Who knows whats normal for CH. Every one is different and one persons episodes can vary too. Just when you think you've sussed out what's normal for you it will change. Some people have noticed an improvement after just a few days on the D3 regime and for others it's been a few months, but hardly anyone has said they feel no benefit at all.
What ever you do, don't stop taking it when you feel better. It needs to reach a certain level in your system and stay there. See Batch's posts for more info about this. You must have the relevant blood tests though.
Maz