Hi.
My name is Steve and I am a clusterhead. I have had clusters for so long that I don’t know what life would be like without them. I started having clusters when I was around eight, but wasn't diagnosed with clusters till I was 23.
Before then they thought I had everything from sinus infections to hating school. In 1976 I went to see Seymour Diamond who told me I had cluster headaches, He was surprised that I started them so young and that my mother had them also. I am now in my 60’s and woke up at 1:53 AM january 3 2014 with the first of my season. I usually go into season October- November or May- June. I skipped last year so G-d is punishing me with a late season this year, just to throw me off guard. That’s what I get for having a bourbon and a cigar on New Years eve. Now I pay the price. Not really , because if I wouldn't have been going into season the cigar and bourbon wouldn't have bothered me, it only would have bothered my wife. I sort of guessed I was going into season because I get irritable before I start to get them and somewhere around the 27th I started having that mood swing and I even said to Robin, “I hope it is all the end of year tax stuff that is making me irritable. I hope I am not getting clusters.”
She said it was too late in the year and besides I am always a grouch (not around my grandbaby little 18 month Ava). She was wrong, but this time I did not get any pleasure telling her so.

So here I am once more in cluster mode. This morning I checked the oxygen. I have a large tank with a high-pressure regulator allowing 12 liters per minute. I have small tanks next to my bed. I have a concentrator that I sleep with. Made sure they were all working. I will need them tonight. I checked my prednisone to make sure that I have enough for 80 mg per day for 7 days. 60 Mg per day for 7 days then 50 then 40, etc… the taper lasts 2 months. I called up my buddy and went and got a greater and lesser occipital nerve block. This time it was Kenalog. Personally I don’t think kenalog works as well as other steroids. I looked at my stash of imitrex. I have 5mg sprays, 20 mg sprays, 50 mg tabs, and 100 mg tabs. The insurance company plays games and so do I. They won’t give me enough of the 5 mg sprays for me to use  appropriately so I need to get scripts for all the different flavors and then use them as I need them. I wind up getting scripts later on to hoard. I went to the health food store and got my bottle of 10 mg melatonin and will take 2 per day one morning one evening. I got my kudzu and will take 2 morning 2 evening.
I take 50 mg DHEA. I will get my script filled for testosterone enanthate injectable and will start that tomorrow. I will unfortunately cancel all my travels for the next 6 weeks. These usually last 6-12. I will get another occipital block in 2 weeks and then if needed 2 weeks after that. The goal is not to have a big breakthrough which lands me in the ER and 150 mg prednisone and Compazine IV. I hydrate very well drinking 64 or more ounces of water. I also drink coconut water. I go on a very clean diet of whey protein and fiber shakes, lots of veggies, no junk. i drink black coffee and tea, and chicken or fish. I take 2 essential fatty acid capsules twice a day. I take 500 mg taurine twice daily. I take 5000 of D3. I take 200 mg Co Q-10.

I have not tried periactin. I have not tried the other triptans. I have not tried Botox. I have not tried somatostatin.

The things that may have worsened or triggered clusters are HCG, L-arginine, L-citrilline, and beet root. I also tried 10 sessions of real hyperbaric which either did not help or made them worse.

The things that have not worked are numerous- bellergal space tabs, midrin, opioids, cayenne pepper, topamax, depakote, verapamil, lithium, DHE, cafergot, Indocin, sansert and lidocaine drops. Acupuncture, chiropractic, homeopathy, massage, physical therapy, and energy healing while having their places can’t touch the beast.

Dr. Steven M Helschien

G'day Steve, and welcome. I notice your O2 is at 12lpm while many CHeads reckon 25 is the go. Top left of your screen is a button marked Oxygen Info with a bit of info that might interest you.

Cheers and beers,

Brian down under.

50+ years a cluster survivor, you are my HERO!! How have you done it?  I just rolled past 2 decades and I don't know how I've made it so far. 

Hi and welcome

The prednisione taper is extremely long. Most of us use a 7-12 day long taper dose as a short term preventive whilst a longer term preventive like verapamil builds up to become effective. There are some significant issues / risks around the long term use of prednisione which include damage to joints. Have you discussed this with your doctor?

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We've found that the higher the flow rate the better as far as quicker time to pain free. Using 25lpm I can abort in about 5 minutes whilst at only 15lpm it takes over twice as long.

I'll chime in on the O2 going up to 25lpm or more through a demand valve. I also note you haven't listed Imitrex injections or Migranal spray. We have also discovered slamming an energy drink like Red Bull or Monster prior to huffing the O2 has helped a lot. I slam a double Monster, ice cold, and then hit the O2. I can abort in 3-5 minutes using this method.

Just curious about the verapamil since your O2 usage was low. What dose? The usual given for BP control is 240mg/day. I find 400mg/day to be my bottom line, and have gone as high as 640. Some even higher. I also combine verapamil with lithium.

There are maybe some things you have not yet tried that could be helpful. Keep us informed as you go along. blessings. lance

With such a long and hard history, I hope that you are working with a headache specialist. So many docs, even neurologists, have meager training in headache and new developments are coming fast enough to make a specialist important.
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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. 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.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
==========
This one became my med of choice after the first use. Nearlyl as fast acting as sumatriptan. Trial 1-3x, wil give you indication of effectieness for you.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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I would take the 20 mg of melatonin all at night, not 10 mg day and 10 mg night. I started doing so about 8 weeks ago and night time attacks stopped 7 weeks ago.

Hey Dr. Steve,

Welcome aboard CH.com, you've come to the right place.  It's always a treat to have a physician in our midst...  It's even more special as a fellow cluster headache sufferer (CH'er) who knows what we go through.

Off hand I'd say 5000 IU/day vitamin D3 is insufficient to prevent your CH...  A pred taper makes it even worse...

Swing by phlebotomy and have a blood draw for the 25(OH)D lab test...  I'll bet a coke & candy bar your results will come back well South of 60 ng/mL...

It turns out it's the 25(OH)D serum concentration (response) that counts... not the vitamin D3 dose.

We've well over 400 CH'ers here at CH.com who have started the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3...  80% of them have experienced a significant reduction in the frequency, severity and duration of their CH.  75% of them experienced 24 hour pain free days and 60% of them have remained pain free.

The following chart developed by Dr. Robert Heaney illustrates the time course average 25(OH)D response to dose of vitamin D3.

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I've overlaid the color bands on Dr. Heaney's graphic based on CH'er posts of their 25(OH)D lab tests and CH status here at CH.com.  A separate online survey of 110 CH'ers taking the anti-inflammatory regimen indicates a response rate consistent with that indicated by posts here at CH.com.

As you can see from Dr. Heaney's chart, it can take upwards of 30 days for the 25(OH)D response to reach 60 ng/mL, the bottom of the favorable response range or "green zone" as I call it.

You can elevate your 25(OH)D serum concentration a lot faster using the 4-week accelerated vitamin D3 loading schedule that squares the response curve as illustrated in the following graphic... 

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The list of anti-inflammatory regimen supplements with vitamin D3 and the vitamin D3 cofactors are illustrated in the following table:

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You can find the same list of supplements along with dosing, dosing strategies, interactions and contraindications at the following link:

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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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The accelerated dosing schedule calls for 600,000 IU of vitamin D3 plus all the cofactors over a 4 week period.  The average 25(OH)D response is a gain of 60 ng/mL over the starting serum concentration.  I know that sounds like a lot of vitamin D3 but it works out to an average dose of 21,000 IU/day over the 4-week period.

The dosing schedule follows:

One or two days at 10,000 IU/day just to make sure there's no reaction to the vitamin D3 followed by two weeks at 20,000 IU/day.  In addition, take a 50,000 IU loading dose once a week for the first two weeks.

At the start of the third week, drop the loading dose and lower the daily vitamin D3 intake to 15,000 IU/day for another two weeks.  At the end of the 4th week, lower the vitamin D3 intake to a maintenance dose o 10,000 IU/day and get another 25(OH)D lab test.

The online survey of 110 CH'ers using this regimen indicates the following response times:

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If you want to see what other CH'ers are saying about their experiences with this regimen, check out the following links:

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This isn't a one-off lark regimen... Dr. Stasha Gominak, MD, a neurologist in Texas, has been treating her migraineurs with a similar regimen of vitamin D3 for over 6 years with similar results...

You can also find a list of 40 health conditions prevented or treated with vitamin D3 all confirmed by level A RCTs at the following link:

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Take care and please keep us posted.

V/R, Batch