Brian,

You are very welcome here. Everyone here knows what you gave been going through and there is hope.

Where do you live in the world? There are Cluster Headache sufferers here from everywhere in the globe, so there is a wealth of knowledge and support available to you any time of the day or night.

Please go to the Medications and treatments section and look at the thread "123 days pain free...". Read through the thread and learn about the D3 Regimen. It's a lot of reading, but it will be worth it. 80% of us have benefited from it.

Then ask as many questions as you need. There is no such thing as a stupid question here, so ask away.

Post anytime, even if it's only to vent. As I say, there's always someone here.

Mind yourself,

Peter.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Generally, neurologists have meager training treating headache. Have you asked about his training and experience with Cluster. If he ducks the issue, time to seek a headache doc.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
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Please supply us a list of your current meds & dosing.

First thought is to remain on your preventive 100% of the time, even when you're in a break. This helpful when your cycles are lelatively short. What is your preventive & dose?
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The issue of a correct diagnosis is esential and so is the skill of the doc. There are dozens of headache disorders which pass for Cluster but which are not headache disorders. Why a solid, accurate diagnosis is essential &, hence having a sharp doc.

Brian,

I would advise that you follow Thierry's recommendation, starting with 50,000 iu per day to get your D3 levels up. Get a blood test for your 25OH D level as soon as possible, to establish your starting point.

As Thierry said, Batch will probably impart his wisdom directly to you. My advice there... Follow it to the letter.

So, start with D3 and Omega 3, and take it from there. What have you got to lose, but your headache.

You can get D3 softgels at 10,000 iu per capsule easily in the US.

Keep posting.

Peter.

Brian,
I would recomend that you take all the elements of the regimen. Magnesium is super important. You can leave out the calcium if you want to but it is rare that someone wouldn't take it for some reason or other.
But like i said above, if all you can find at the moment is the D3, then take that, and the magnesium is easy to find too, 400mg/day is what you need.
Below is a link to some high potency D3 softgel, it is iherb website, a great place to shop for our regimen.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


Magnesium, 2 tablets/day

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

All the best

Hi Brian, and welcome

First of all, it's good that you are getting on the D3 regimen because that will give you long term help.  Batch will help you along if you need it.

The sumatriptan injections can be split, so you can get 2 or even 3 doses from one pen.  On the left of your screen is a blue tab called "imitrex tip". Have a look there as it explains how to do it.  Most people get exactly the same relief from 2 or 3 mg, as they do from the full 6mg injection.
There are also a different brand of injection (from sun pharma) which are more fiddly to do but if you google "cluster headaches splitting injections" there is a youtube clip of a guy showing you what to do.
I don't have touble getting the injections like you do, (good old British NHS) but I still split them all the time. The damn things go off like a nail gun and I find splitting them is a much gentler way of using them - and less nasty drugs going into your system.
Alternatively, get some syringes - the type diabetics use.  Discharge the pen into the syringe and use it from there.  It's easier to see howmuch you are using.
Also, try to get your supply of injections when you are not in cycle so you can stockpile a few.

Take a sumatriptan pill before going to bed. This will often delay the first attack so you get a few hours sleep.  Be careful to watch how much you are using though as the injections and pills both count toward the recommended daily dose.

Try this too.  At the very first sign of pain (don't wait till it ramps up) gulp down a redbull really fast.  It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do,Redbull, Rockstar, monster etc.  This trick doesn't work for everyone, but many folks here swear by it. It's cheap and easy to get so worth a try.

Use the 02 at home and save the injections for when you go out, and if the redbull works always have them with you.

Hope this helps.  Keep us posted.
Maz.

Also ask your Dr. to prescribe the 100mg trex tabs and split them.  I once went to my Doc with a list of all the monthly allotments of the triptans, Imitrex, Maxalt, Zomig, Amerge and asked him write scripts for all of them.

69Strat wrote on Apr 28^th, 2016 at 6:26pm:



Welcome Brian...you are home...and all these wonderful replies prove you are in the right place!

May your fight with the ins droids be fruitful...the quote above is SPOT ON....know what you want...get a good Doc(priceless!!!)...go to battle...it gets to be fun to beat the bastards after a while...........

Best

Jon