Damn....I can see why he said cluster headache....sure sounds like it to me. While he recognized the symptoms...a good sign...he is completely clueless about treatments...really bad sign.

For now, get some energy drinks, rock star, monster, any containing caffeine and taurine, pound one down at the onset of your symptoms, many can abort or substantially reduce an attack that way.

Find a headache specialist. Doctors get about a total of 4 hours of headaches in medical school. Not enough. There are hundreds of headche types, and it's even a tougher diagnosis if you have multiples, migrain and CH etc. So a headache specialist is critical. Start a headache journal, when they start, how fast they build, how high they build how long they stay at peak, how fast they fade. Try and identify triggers...avoid alcohol an almost universal trigger!!!

If it is CH, get oxygen prescribed so you can have it at home. Read the oxygen info link on the left as it must be used correctly to be effective. After 31 years of these things oxygen is still my first line and most effective abortive, I can kill an attack in under 10 minutes.

Sorry you had to find us, no doctor here but damn, sure sounds a lot like CH to me.

Joe

Quite essential to get a good headache doc on board; to get an accurate diagnosis. Only then can you find guidance to effective, long term treatment.
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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.  Call 1-800-643-5552; 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.
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This is an excellent first read to help you understand Cluster (IF, in fact, that turns out to be what you have.)

 
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]

Dr. Constance Johnson

Clarksville


E. Arthur Franklin
Memphis
 
Jan Lewis Brandes
Nashville

 

Dr. Michael DeShazo

Memphis, TN

Interesting about Constance Johnson. I had started to make an appointment to make the trek from Nashville to Clarksville to see her last summer, but didn't go thru with it because I was getting the CH under control, plus I became a little wary when I saw her website was all about migraine and BOTOX, with BOTOX mentioned inn caps 6 times in the "welcome" blurb alone, with no mention of CH anywhere on her site.

I guess you can't necessarily judge a doctor by her website.

Lacey wrote on Jan 5^th, 2010 at 1:41pm:


OK I'm still seeing a couple references to to Jan lewis Brandes in the replies here, but again, as of a couple months ago, the nice way to describe her services for an episodic CH sufferer is "useless as tits on a boar".

She makes you wait months for an appointment.

No response necessary to that last post beje..just read what you posted..i was trying to reply to java before reading the rest of what was posted.  Sorry my mistake.

Now, after reading your post completely, I can see ill be canceling that appointment and I honestly dont know if i want to be seen by anyone else.  (my sentiments are if you have a gp willing to work with you and its helping..y go elsewhere?) but then again ive already answered that question i guess.  Id like for a dr to offer ME suggestions.

Thanks for the input of experience and also, sorry for jumping the gun.

Lacey,

You might try some melatonin at night (some take 6mg -- depending on YOU - I take anywhere from 6-15mg). It gets you thru the REM sleep and helps you rest at night to get you thru the days. (At least it does me). Sometimes it takes a few days to start working so don't give up if it doesn't work the first time you try it.

And the energy drinks at first sign work pretty good.

Instead of the Tylenol try Excedrin ES (I take three with a cup of coffee). This will sometimes abort a CH for me if I hit it soon enough BUT don't do it too often because it will cause rebounds. It's for EMERGENCY use only. (Excedrin is loaded with caffeine).

And go to the neuro ARMED with infor (read read read). WE have to be our best advocate with these things. The best neuros will LISTEN to us. Remember that.

Wishing you PF time real soon..

Hugs BD