Hey Scotty,

Lotsa plenty familiar stuff in your post there.

It has become abundantly clear that doctors, including rank and file neurologists, are largely a bunch of ignorant harm doers when it comes to CH.

Your absolute best hope in the doctor realm is a headache specialist. Not that they aren't a bunch of greedy and negligent a-holes also, the way they routinely require CH'ers to wait months for an appointment, but at least they tend to be knowledgeable about CH.

Meantime, if your self diagnosis of CH is correct, some of the most effective, most successful  treatments can be found out about here at this site - so congrats for making it here!! 

Oxygen as an abortive, administered in the newer High Flow, non rebreather manner as outlined in the oxygen info link to the left of this page, has been a lifesaver for so many.

I too recently had a string of ever increasing shadows, concerning me that another episode was looming. They stopped short and have been gone now for a couple months though, since I tried the clusterbusters.com  approach for prevention. That result is nothing though compared to the severe chronics who have found great relief this way and gotten their lives back. Here's an introductory video on the subject: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Welcome aboard, Scotty. And may I say, sorry you need to be here. But...yes, it does sound as if your symptoms match those of a cluster attack. And I can only agree with the advice you've been given. Make defeating this you're #1 goal in life, and read everything here, and take notes, and try what you haven't tried that has worked for others. We do believe the beast is controllable. Also keep in mind that we often require much higher levels of meds and OTC stuff than do non Clusterheads. This can make a huge difference in the effectiveness of a prevent or an abortive. Ask any and all questions, and someone will get back to you. I promise. God bless! lance

It will save much pain and time if you find a headache specialist now--NOT any neurologist, but someone with training/experience with complex headache disorders. CH is such a minor disorder re. numbers, that finding knowledge is often the major issue.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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Self-education is the next major step. Knowing about treatments will give you a leg up in talking with your doc and getting a sense of whether they know enough to help you.

Start with the OUCH site, left, and it's many internal links.

Print the PDF file, below.
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Print the entire file.....




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Read the messages here and you will see yourself, glean help and hope.

Stop the pain meds; they tend to make headaches worse.

Getting a good diagnosis first is critical. There are many, many kinds of headache disorders--with overlapping symptoms, sometimes masking other, quite serious disorders. Cutting thru the thicket of possibilities is a must to getting effective treatment.

Not too much jaw pain but neck pain is a SOB for me.

Hey Scotty,

So glad to see that you found this place!!  My only advice for you is that when you see your doc DEMAND oxygen!!  It really can make the most enormous difference to how you cope with CH.  Knowing that you can abort a hit in such a short amount of time just about eliminates all fear associated with the pain of CH.

I wish you all the very best,

Kate

BTW I usually know that a cycle is about to start because I get that tingling feeling in my temple on and off for a few weeks before it starts up.

Kate in Oz wrote on Oct 12^th, 2010 at 7:33pm:

My first sign starts from a sharp feeling in my sinus area like I am breathing really dry air.

Just another dad wrote on Oct 13^th, 2010 at 2:54pm:

Nah Not Morbid ... Just Twisted like my sense of humor     

Glad you will start a HA Diary, it helps if the Doc can see something in black and white as to what you are going through.

Hmm... I didn't see any need for you to delete your initial post, but that's me.

Quote:

Anticipation of death is what happens when you are not Truly Living.