I've been getting clusters for about 7 years now and am just coming off of a 2 year break. Decided to try and find out more about them and found this place. They started back up about a week ago and I'm back to running on little to no sleep. Last night was bad with one at 12:10 for about a half hour then a short sleep and back at it at 2:15 for an hour.

Last night was the worst I can remember although I'm sure there were worse in the past. Always considered myself fairly tough until my first cluster. Last night I cried and begged God to stop them and then cursed him for not. Finally got the Dr. to write a script for steroids which seem to slow things down. It's only noon and I'm already thinking about going to sleep tonight knowing that it will only bring the pain back. It's so hard on my wife because there's nothing she can do and even my dog lays next to me whining as I kneel on the bed with my head in my arms trying to squeeze the pain away. 

My heart goes out to all of you who suffer from this wretched thing but I am glad I found this place. At least I know there's hope for some relief.

Glad you found us!!

There is hope for relief. A LOT of hope.

Please stick around and read up a bunch, ask questions and stuff, because the effective  treatments are becoming more and more plentiful, but you won't likely be adequately informed of them by a doctor.

So here's a run down on a few of the very welcome, major developments in cluster relief-ville:

High flow / non rebreather O2. Not the much less effective low flow rebreather O2 still widely prescribed by doctors. The oxygen info tab to the left of this page is the place to get the skinny on this.

A relatively new sensation here is the vitamin D3 regimen outlined in this topic: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Amidst reports of cycles being terminated and stuff, many of us have jumped on board with this, especially since it's easy, not risky, and probably good for our health in other ways anyway.

Clusterbusters. This can be an incredibly effective preventative approach, and it's been around for quite awhile now (actually for thousands of years among indigenous peoples). There's an entire message board devoted to it START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, a Newsweek article devoted to it START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, and lots of CH'ers who have found relief devoted to it.  :)

Hi Steve

Bejeeber has posted good info, well worth reading up and following up on.

You mentioned steroids, I assume that this is prednisione on a taper dose, starting at about 60mg and dropping down over a week or so.

Have you taken anything else? There are other preventives, like verapamil and lithium, that can prevent a lot of the CHs from happening. These can take a week or so to become effective, so start them when you start the prednisione to give them chance to build up.

Tell us more about what you have tried and we can suggest more.

Also read, read and read some more. There is a lot of great info on this site. Then ask questions galaore.

Where are you in the world? Posting your general location can help people to give targetting info.

Welcome and glad you found us too. There are a lot of helpful links and people here. We're here for ya!

If you're seeking some basic info: Explore the buttons (left) starting with the OUCH site.
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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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A couple of 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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The PDF file, below, is the latest evaluation on commonly used meds.
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As they surface, give me specific questions but, even before you ask--we recommend working with a headache specialist, if at all possible. Great bulk of docs have limited useful skills/knowledge with complex headche disorders.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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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Hi Steve,

So glad you found us also, but so sorry you have this horrible disease.

Along with all the above great info, all I can say is the people on this site are the best ever... I have been around for 10 yrs and I would never have made it thru some cycles without all the wonderful ppl and support; words cannot describe how important these ppl and board is during a cycle...  good luck and stick around, ask questions and take good care.

Thanks for the warm welcome and the info. Just got done with another round with the beast. Gotta get back to bed (4:30 comes early) but not quite ready yet. Hope he stays away the rest of the night I'm really getting worn down.

As for where I live it's in the Thumb part of Michigan except at night then it's right next door to hell. 8-) Any and all advice is greatly appriciated.

Couple of quick questions and hope it's OK to ask them here. If i try the melatonin will it still allow me to wake easily in the morning even if I don't get much sleep if the beast visits?

If I get the Dr. Tomorrow to give me an O2 script does insurance cover most of the cost? I make OK money but am still recovering frp\om the economic downturn.

Steve Pray wrote on Jul 21^st, 2011 at 1:24am:

As for where I live it's in the Thumb part of Michigan except at night then it's right next door to hell. 8-) Any and all advice is greatly appriciated. Couple of quick questions and hope it's OK to ask them here. If i try the melatonin will it still allow me to wake easily in the morning even if I don't get much sleep if the beast visits? If I get the Dr. Tomorrow to give me an O2 script does insurance cover most of the cost? I make OK money but am still recovering frp\om the economic downturn.

Michigan, huh? Well there ya go, that's your problem right there. Nah, just kidding. I was more or less your neighbor for three years living just outside of Milwaukee. Loved it. As to your questions:

no way of telling the effects melatonin will have on you til you try it. Doses seem to be effective in a rather broad range of 3-18mgs/night. I find 15gs works for me and no grogginess in the morning. I take it an hour before bedtime.

Insurance will generally cover O2 but some have found it problematic. My ins co chalks it up to deductible but my local supplier only charges $40/month for as much O2 as I need. Others have gone the cheaper route of using welders O2. Some threads on this site describe how to go about it. The key is getting the right Rx for 15+ pr better 25+lpm and a nonrebreather mask. Blessings. lance

Welcome to the board Steve. Have you worked at an effective prevent treatment yet? A med you take daily to reduce the frequency and/or intensity of your attacks? I use lithium, at 1200 mg a day it'll cut 60-70% of my attacks. Oxygen and the rare imitrex jab will eliminate most of the rest. Verapamil is the most common first line prevent.

Joe