Hello everyone, My name is Chris, I have just recently and thank god, very swiftly diagnosed with CH, I am from Minnesota, And am for the very first time experiencing cluster headaches, It seems my cycle started about a month and a half ago, and when I went to the ER after the 3rd time, they sent a neurologist down who quickly determined that I was experiencing CH, I honestly do not know how you people can do it for as long as you have. I am so glad there are people here with experience to share. within seconds I feel not so alone.

Hey Chris,

Thank god you came here. This is where I and so many others have found critical info and advice that has helped us tremendously.

Please hang out and read up here a LOT.

I first started experiencing episodic CH 30 + years ago and have tried a boatload of treatments, RX and otherwise.

I'll list some of my top favorites that I consider cutting edge:

High flow 100% O2 as outlined in the oxygen info link to the left This is not the way most doctors prescribe it. It is much more effective than that. The medical community has been very slowwww to catch on.

The high dose vitamin D3 regimen that is new enough here that it is not as proven as some other approaches, but initial results being reported are looking pretty impressive! Here's that topic:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The Clusterbusters.com approach. Quite possibly the most powerful preventative around. Used by indigenous peoples for thousands of years. Here's a Newsweek article on the subject: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

OK that's for starters with the non-toxic treatments. Here's to you finding significant relief.  8-)

-Jeebs

Quote:

within seconds I feel not so alone.

and if you stick around here, you wont ever be alone again, sir.  We're all with you.

Linda

Since it was an ER doctor who diagnosed you, are you going to have a follow-up with a regular neuro or headache specialist?  It's really important to begin receiving monitored care from someone who is equally dedicated to helping you tame the beast. Some interventions, like O2 used properly, are nearly universal in their effectiveness. Others, like verapamil and lithium, are more selective. And there are so many preventatives available.  I would encourage you to read everything you can find on O2 usage here. Including the energy drink tip. And push for it at your first opportunity. Please feel free to ask any questions. It's why we're here. God bless. lance

Agree with Lance. You will have much better chances of a good outcome by working with a specialist, if at all possible.

Important for you to learn about Cluster because knowledge will improve your treatments and ease your anxiety. Explore the buttons, left, starting with the OUCH site, and then the following;
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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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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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The PDF file, below, will outline the most common treatments for Cluster. Printing it out will give you a tool to guide discussions with the doc.

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lunchbawks wrote on May 31^st, 2011 at 10:43pm:

Hello everyone, My name is Chris, I have just recently and thank god, very swiftly diagnosed with CH, I am from Minnesota, And am for the very first time experiencing cluster headaches, It seems my cycle started about a month and a half ago, and when I went to the ER after the 3rd time, they sent a neurologist down who quickly determined that I was experiencing CH, I honestly do not know how you people can do it for as long as you have. I am so glad there are people here with experience to share. within seconds I feel not so alone.

He wasn't diagnosed at the ER, he was sent to a neuro.

Ya that's what I read as well.
they sent a neurologist down who quickly determined that I was experiencing CH,
More importantly

Quote:

within seconds I feel not so alone.

That is worth ten neuro's and if used properly this place is worth ten headache specialist's. Welcome educate yourself on your condition, it's worth 100 neuro's and a bucketload of headache specialists.
the bb

Welcome to the board lunchbawx, what they all said! The good news is you will never be alone again. Read, read, and read some more, an educated CH'er hurts a lot less. Welcome home.

Joe