Hello from Alberta Canada
I have suffered CH for 30 years and I currently have been under attack everyday for the past 4 years. After being accused of "faking" these things by my co-workers my boss finally witnessed an attack and was completley in shock at what he saw. The amazing thing is that I still had a battle to be able to take medical leave and after almost 6 months I was finally given that medical leave. That was in November 2006 and I am still on leave. I have been on every medication possible and nothing has worked. I too use oxygen but it has not been working like it used to. Just recently I was given a prescription for lidocaine spray but I am having a hard time finding a pharmacy to fill it! I live in a small town and have to travel to the city and wait 3 days for it to be filled. I just do not understand why there is such a lack of knowledge in the community about Ch. For 30 years I have been told there is nothing specific to cluster headaches. And why in the world do they call it a Headache? For now I will just suffer in silence and pray that these things will STOP. I guess I have just given up on the medical community as it is now 30 years later and still no explanation.
Thanks for listening!

Hi Debstra,

Giving up on the medical community and lamenting the incredibly poor decision to label this condition a headache are certainly familiar refrains around here, and for good reason.

There is a community where strides have been made in finding the most effective ways to relieve CH though, and I'm very glad to see you just landed there (Here).  :)

So for openers, I'd like to mention that I too found O2 to be ineffective after awhile, but I and legions upon legions of others have been very happy to find out here about the newer, more effcetive way to administer O2 as outlined in the oxygen info link to the left. You wouldn't likely have heard about it from any doctor - those idiots remain willfully ignorant on the subject. Please check into this toot sweet if you haven't already tried the high liter flow/non rebreather mask approach.

And you've been under attack every day for 4 years? That SUX!!!! >:( :(  That sounds like a terrible chronic case to me, but from what I've seen, there may be more hope for you than just High flow O2.

I'm saying this because we've seen some of the most severe chronic cases that weren't being helped by modern toxic medicine really respond to a non toxic treatment, a preventative, that none of us are going to hear about at the doctors office. IMO it is a MUCH more promising therapy than the old lidocaine drops BS that you've currently been prescribed.

I beseech thee, suspend skepticism enough to read this recent Newsweek article on the subject:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


And this video talk by one of our fellow CH'ers on the subject:
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Welcome, please stick around, research, ask questions, and quite possibly gain valuable info on new ways to get some RELIEF.  :)

Following is aimed at the U.S. market but may give you some ideas for locating a good doc. As you now understand, many docs have virtually no training and little experience with 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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Many of us have learned that we must know more than our doc and, if blessed, have a doc who will receive the medical information which we have to guide them.

So, learning in depth is an essential survival skill!

See PDF file, below
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Print the entire article:




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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Explore:   
A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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===

Explore:

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
60 Revere Dr, Suite 330
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.

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And stay with us, asking questions!

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Quote:

my boss finally witnessed an attack and was completley in shock at what he saw.

I went to see my family doctor years ago for an unrelated problem and as I sat in the exam room I started to get hit.  By the time he came in, I was at the point of ripping his wall-pasper to shreds.    He had previously not had any patients with CH and as he came in and saw me practically writhing in agony he stood in the door-way just starting at me for what seemed like hours and then he asked his nurse to get me a shot of Imitrex.

I was so embarrassed by the whole thing but later on realized that this was the very best thing that could have happened.  From that point on he was on my side regarding treating me.

Having your boss see youlike that,  may have embarrassed you also, but it was no doubt the best thing that could have happened.