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Message started by Jimdog on Feb 6th, 2009 at 10:10am

Title: Help
Post by Jimdog on Feb 6th, 2009 at 10:10am
Hello, This is my first post here so please fogive me if I make a faux paus (sp). I have suffered with cluster headaches for 10 years. I saw some doctors , had a million tests , scans , etc and for all the effort and cost that I spent the tests all showed that yes I have cluster headaches. Not exactly sure why I needed to do that other than to satisfy my doctor that I wasn't completely nuts.

I now live in Florida and for the past six months  I have been in one long cycle that just wont stop. Sure I can take Imatrex and 20 mins to the second later the headache is gone but I am just wasted , out of energy and feel hungover. Imatrex and Ice were the only tricks in my Doctors black bag.

I really need to see another doctor but I just can't afford to visit one after another trying to find one that has a proven track record. I am sure they all mean well but in my experience (I have had 8 major back and neck opperations) there are some doctors that have the magic and some do not.

So the reason for the post is to ask if anyone can direct me to a doctor that has proven to be capable of being able to deal with a patient like myself. I live in Deltona Florida  (near Daytona on the east and Orlando on the west. I would greatly appreciate any help that anyone can offer.


Again Thanks in advance for your help.
JIm

Title: Re: Help
Post by Bob_Johnson on Feb 6th, 2009 at 10:54am
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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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 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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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Title: Re: Help
Post by Just Plain Carl on Feb 6th, 2009 at 11:53am
Hello Jim,

Welcome to the looney bin.

If you haven't tried it yet, get some oxygen.  Check out  the "oxygen info" link on the left side of your screen.
It works for a whle bunch of us.

Good luck finding a good Doc.

                                                     PFD's
                                                      JPC


Title: Re: Help
Post by Guiseppi on Feb 6th, 2009 at 6:02pm
I know the initial diagnosis can be a pain in the butt but it's so important to first eliminate all the bad scary stuff, then get the correct diagnosis for your headache. Meds that are beneficial for some types are worthless or even harmful for others.

Great link by Bob to locate a decent neuro, hopefully some people near you can chime in with docs they've had good luck with. In all likelyhood you're still probably going to need to educate your doc. Read everything on the board, and develop a collaborative partnership with your doc to treat these things.

And do push for oxygen. 30 years of fighting the beast it's still my first and most effective abortive. 6-8 minutes and I'm pain free, with no "Imitrex hangover!"

Welcome to the board, now get reading! ;)

Joe

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