Hello: My clusters started on May 15th of 2012.  I do have good days, however the bad days seem to be coming more often.   In June of 2012, I had to visit the ER.  They gave me Tramadol and Hydrocodone.  The Tramadol was absolutely useless.  The Hydroc. helped much more but not 100%.  I am not taking Phenergen and Lortab.  I really don't take them until I feel the cluster coming on.  Then they take over an hour to work.  In that waiting time, is there ANY suggestion to help with the pain?  I get the "alarm clock" type too and boy are they terrible.  I really didn't think the pain could get any worse but I was awfully wrong.  Does anyone use heat? ice?  Any suggestions would be greatfully accepted.  Thanks so much.

I'm sorry, I meant to say I'm NOW taking Phenergen & Lortab.  Sorry, I have a headache!

Hey KMJ,

Have your doc order you a lab test for 25-Hydroxyvitamin D, also called 25(OH)D.  This is the metabolite of vitamin D3 that's used to measure its status.

The normal reference range for this lab test is 30 to 100 ng/mL...  Too many physicians will say your vitamin D3 level is "normal" at 31 ng/mL...  This is not true for cluster headache sufferers (CH'ers).  We need a 25(OH)D serum concentration in a range of 60 to 110 ng/mL for a lasting therapeutic response.

Nearly all the CH'ers with active CH who have gone in for this lab test prior to starting the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3 have results indicating they're deficient.

The really good news is 79% of 300 CH'ers who have started this regimen experienced a significant reduction in the frequency, severity and duration of their CH...  70% of the 300 experienced a pain free response.

You can find the treatment protocol, list of supplements, dosing and dosing strategies for the anti-inflammatory regimen at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you want to see what other CH'ers are saying about their experiences with this regimen, click on the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

At 20 to 30 cents a day for the over-the-counter vitamin and mineral supplements... this regimen has a very favorable bang for the buck ratio.  No major adverse side effects to boot...

Take care,

V/R, Batch

Before you start taking suggestions to take-this-or-take-that, it's essential to have a sound diagnosis. Headache is not a simple disorder to be treated by OTC products and your experience with the ER shows, as it has to many others, that this is one of the poorer sources of good information re. headache.

So, in order:

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Then, if at all possible, find a headache specialist.

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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Then print out the PDF file, below. Both for your education and as a tool to discuss treatments with the doc you choose to consult.
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And this for some basic information; more good reading i the buttons, left.


Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

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What Bob said, followed by what Batch said!  Batch's regimen won't hurt you even if you don't have CH.  In fact it will be helpful in a number of areas.

AFTER you have a good diagnosis from a qualified Dr. get back with us and you will get a number of recommendations. 

All the best,
Jerry

I have been able to dump the pharmaceutical route, after over 30 years of CH, by using The Batch regimen above. It's safe, good for you even without CH, certainly worth a shot.

Joe

In a word - YES.  For many of us, there are meds that are very effective.  This site and the ouch site describe these.

Like many, I spent quite a few years and several doctors before I finally got one who knew about the topic.  I went through several cycles on inappropriate and ineffective (although rather recreational) dope.  I did find out that O2 was my friend as an abortive.  I was finally diagnosed with episodic CH's and was treated as such.  I was lucky enough to find a good doc, and lucky enough to be responsive to conventional treatments.  I finally turned in my O2, because I hadn't needed for 5 years.  My cycle now is a handful 0f Kip1's, and I'm okay with that.

So, YES, meds can work.  But, as you will find from this site, we are all different.  Find a good doc, and work with him/her to find what works for you.

Yes.  Many meds have proven very effective at controlling CH's. 

Which meds work best depends on YOU.  Plenty to read in the archives section including thorough research studies.  See "Medical info" and "archives" located at left side of your computer screen.  Also search button works wonders. 

Traditionally, there are three types of medical treatment for CH's.  1. Transitional.  2. Preventative and 3. Abortive.

One thing is for certain...narcotics are not part of any of the three traditional treatments for CH's AND narcotics will make your CH's worsen AND generally speaking narcotics will destroy your quality of life.

The vitamin regimen was a 100% ineffective disastrous nightmare for me and I followed protocol 100%.  However it does seem effective for many.  Might consider it.

Bottom line is we are not doctors and Bob gave you the best advice.  Good Luck! ;)

-Gregg in Las Vegas

If you are being hit and want the pain to stop immediately.. Triptans are extremely effective at aborting hits.

When in cycle I use Imitrex Injections.  For me they are 100% effective. 

If you are episodic you may notice one thing... staying out of cycle with whatever regimen you select... the vitamin protocol, clusterbusters, etc... seems to be a lot easier than trying to break an existing cycle.   

So attack it from both sides... have your prevents and have your aborts. 

Lobster wrote on Jan 15^th, 2013 at 12:53pm:

If you are being hit and want the pain to stop immediately.. Triptans are extremely effective at aborting hits. When in cycle I use Imitrex Injections.  For me they are 100% effective.  If you are episodic you may notice one thing... staying out of cycle with whatever regimen you select... the vitamin protocol, clusterbusters, etc... seems to be a lot easier than trying to break an existing cycle.    So attack it from both sides... have your prevents and have your aborts.

It should be noted that there may be two types of "Preventative" treatments...

The first is traditional as I was referring to above that reduces intensity of attacks and number of daily attacks. 

i.e. Verapamil, Topomax, Lithium, etc.

The other would be as mentioned in the post above referencing preventative measures that may be helpful avoiding a cycle.

i.e. vitamin protocol, clusterbusters, etc

Please don't be confused about the necessity, understanding and value of traditional Preventatives which is an absolute necessity during cycle.

-Gregg in Las Vegas