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Cluster Headache Help and Support >> Cluster Headache Specific >> My new Neuro.
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Message started by MPMIII on Sep 18th, 2009 at 9:23am

Title: My new Neuro.
Post by MPMIII on Sep 18th, 2009 at 9:23am
I recently switched neuros and when I went to my appt.  My new doc told me that there was no way I could have CH because cluster headaches only came in clusters and not all year long.  I told him I was of the chronic variety and he had not heard of it.   It's a little unsettling to go to a doctor for help only to find that I knew more than he did about clusters.  I can thank the board for that.  At least he wrote my scripts and sent me on my way.

Title: Re: My new Neuro.
Post by Chad on Sep 18th, 2009 at 10:47am
Hopefully your new neuro has an open mind unlike my last one.  I hope your new guy does some research on chronic cluster sufferers because if hes doesn't I'd put him in that category of "their only in it for the money or just plain ignorant". 

My last neuro too gave me scripts, but said that I shouldn't listen to folks on these chat boards.
I bit my tongue, got through the visit and never went back.  Now I have new neuro to see in December who I found on one of those list and specializes in pain management and headaches.  When I called, the secretary even has a daughter who has clusters and was describing exactly what I go through and mentioned things like O2 so I think I may have found a new home.

Title: Re: My new Neuro.
Post by Bob_Johnson on Sep 18th, 2009 at 11:20am
Why not explore your options?
========
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 Login or RegisterEND 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 Login or RegisterEND PRINTPAGE 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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I you must stay with this doc, print this entire article and give to him. How/if he receives it will tell you a good deal about your future with him.

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND 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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If he is receptive, give him this review. First book written for M.D.s:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.




Title: Re: My new Neuro.
Post by Pixie-elf on Sep 19th, 2009 at 10:12pm
This is the case with quite a few rare conditions. I've had to explain to doctors what I have, plenty of times because they'd never heard of it.

It's pretty scary. But if they're willing to listen and educate themselves, it works out nicely.

Title: Re: My new Neuro.
Post by bejeeber on Sep 20th, 2009 at 1:24pm
Just sad that an actual neurologist could be unaware that there is such thing as a chronic cluster headache sufferer.

Add this guy to the lonnnnng list of ignorant bozos in the MD profession.

Title: Re: My new Neuro.
Post by seaworthy on Sep 20th, 2009 at 1:58pm
Maybe he needs to see this from the IHS:

3.1.3 Chronic cluster headache
Description: Attacks occur for more than one year without remission or with remissions
lasting less than 14 days.

Title: Re: My new Neuro.
Post by MPMIII on Sep 20th, 2009 at 2:55pm
At least he now knows about chronic clusterheadaches and maybe he's trying to educate himself.  I think I'll refer him to ch.com next visit.

Title: Re: My new Neuro.
Post by seaworthy on Sep 20th, 2009 at 4:31pm
He needs to be refered to the IHS site for classifications and diagnosis.

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