Hi, I have had ch for about a week now, every evening around 7:30 - lasting 2-3 hours. Today I am dreading for that hour to even come near. I hope the anxiety and stress doesn't trigger a headache. I would love any advice on preventative, hopefully non medicinal, measures.

It was about this time of year last year that I had this for 1 week. I thought I had a pinched nerve or something...lived with it with the help of advil for the entire week. This time, I am sure it's CH. Is it normal to have it once a year for a week?

Called the doc today for an appt.

Thanks!  :-[

Hi CH    [smiley=wave.gif]

Sounds like it could be CH. Not to minimise your pain, but if you have it for 1 week once a year, believe me you are lucky.

It's imperative that you get a proper diagnosis - no one here can give you that - because there are many types of  "headache" that can mimic clusters, and they all require different treatment. At the left of your screen there is a link for "cluster quiz" which may give you a lead.

You don't say where you live so I don't know how easy it is for you to see a doctor or neurologist, but if and when you get the diagnosis of cluster headaches confirmed there is plenty you can do to help your self. Unfortunately you will find most doctors are clueless about this condition, so do your own research. You will find all the answers you need right here on this site.

You need a good preventative med- verapamil seems to be a favourite. Then you will need an abortive med for the attacks that sneak through. Sumatriptan (imitrex) auto injections are my fave for that. Also pure oxygen, see the link on your left "oxygen info" highlighted in yellow.

Read all you can here and you will learn a lot. In particular there is a thread titled "123 days pain free and I think I know why". It seems to have taken the boards by storm and had huge success. Sorry I can't post a link - computer dunce! but I'm sure someone else will come along and do it.

For an emergency, try chugging down a red bull. It's the combination of caffeine and taurine that does the trick. Any energy drink with those ingredients will do. It doesn't work for every one but does work for many so worth a shot.

Keep coming back here. You will find all the support you need, and the answers to all your questions.
Take care
Maz

I'm with Maz, it certainly could be CH. Any chance you could get a referral to a headache specialist neurologist? Headaches are such a specialty and CH is so rare that most GP's and even your garden variety neuros don't have the experience to diagnose and treat the more complex disorders of the head!

If it turns out to be CH, and your cycles continue to be this short, they could easily be treated with a short prednisone taper. It's an effective med to block CH but can't be taken for long periods as it's too hard on the body.

What part of the world do you hail from, maybe we can refer you to a qualified neuro someone else has used successfully?

Joe

Thank you for all the information. I am in New York. As the hour of doom is coming close, I may get a redbull on hand to see if that works.

I took the quiz and the only thing that I said "no" to in the section for CH is that my pain does not go away in 10 - 15 min. I wish! They last about 2-3 hours - starting with the acute peak pain, always on the left from the back of the head around to the temple. Drinking lots of water now from the "water water water" advice.

I will check out all of the great information here and check back frequently. Thank you!

These are docs other CH sufferers have used and recommended, any near you?

New York
Bay Shore:
Dr. Norman L. Pflaster
South Shore Neurologic Associates
Bronx:
Dr. Randall G. Berliner
Regional Neurological Associates
Dr. Seymour Solomon
Montefiore Medical Center
Dr. Derek G. Randall
Camillus:
Dr. Kevin W Thomas
FamilyCare Medical Group – Neurological Division
Canandaigua:
Dr. Robert S. Knapp
Ontario Neurology Associates
Cedarhurst:
Dr. David Steiner
Five Towns Neurology
New York:
Dr. Mark W. Green

Mount Sinai Center for Headache and Pain Medicine
Dr. Alexander Mauskop
New York Headache Center
Dr. Lawrence C. Newman
The Headache Institute St. Luke's Hospital
Owego:
Dr. Keith Nichols (PCP)
Rochester:
Dr. Gilbert Proper
Pain Symptom Management Center

Dr. Joseph I. Mann
Greater Rochester Neurological
Schenectady:
Dr. Bruno P. Tolge
Schenectady Neurological Consultants and the Headache Center of Northeastern NY

Stony Brook:
Dr. Patrick E. Poole
White Plains:
Dr. Ronald M. Silverman
Neurologic Consultants of Westchester
Williamsville:
Dr. Peter R. Kinkel
Kinkel Neurologic Center,

Joe

Before you do/take anything--get to a headache specialist. It's rare to find general practice docs who know Cluster and its treatment.

While searching for a doc, do some basic learning, on the assumption you are dealing with Cluster.
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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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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Avoid OTC pain meds. Taken in excess they will increase attacks and, if you have Cluster, not effective anyway.
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Afraid that you will have to reconsider the idea of finding non-medical treatments. Print out the PDF file, below. These are the most often used meds for Cluster.

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THank you for all of this information. On the research path today - will look at all the information. I am really glad to have found this forum. This is the most helpful information I have gotten anywhere. Thank you to all of your for taking the time to educate me about this horrible pain.