Anyone else feel like your doc learns more at your appointments than you do?  To be honest, 99% of what I've learned about this disease I've learned from you guys and on this site.

He was going down my list of medications, talking about which ones work, which ones don't, etc. He got to Imitrex and asked how that works. I told him it works every time but I can only take it two times a day according to the prescription.

He said "that's odd, Imitrex hardly ever works for cluster headaches. There must be a migraine component to your CH." I said "that's not what I've read - other people with CH I've heard from often say it works for them."

He said "well, look at the documentation that goes with the medication - it doesn't say anything about using it for cluster headaches."

So happens I had reread the little fine print fold out thing that comes in my refills and there's a whole section on CH including efficacy statistics. 75% or so for CH to abort within 15 min of injection or something like that. I showed it to him.

I'm probably sounding like a real jerk know-it-all and I regret that, but this kind of thing really bothers me. How many patients does this guy have that he hasn't tried Imitrex on because he didn't know it works as well and often as it does.

I also asked about oxygen and he said anything above 15 LPM is dangerous.

Anyone know a good neuro for CH on Oahu?

WOW! Yeah, sadly, the lack of knowledge/experience is well documented here. Did he at least sound open to being educated? Batch has some great oxygen info you can print out to bring him up to date on what's working with 02!

Joe

You may have a doc to train. If he listens your doing better than many others.
Send him here where the schooling is free. We would expect a small discount to you for his learning experience.
CH.com can also provide referrals to his practice if he gets an understanding. Easy money for the Doc.

Sadly most Docs have no more experience with CH than we did when we first got hit. It takes time and practice. But it also takes patience on our part to give them a chance to learn and my quess is he's learning now.

If he is receptive we can provide mucho MEDICAL literature which will carry authority. Start with these items and see what kind of reception you get.
_____________________________

 
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]
=========

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)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
============================================

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
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

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

Thanks guys, and thanks for those article links!

I don't even know if I'll return to the guy. Besides what I told you, the staff in his office doesn't answer the phone most of the time, and they don't return calls when you leave the voicemail. I thought maybe they were understaffed but found three people working in the front office.

I arrived half hour early and wasn't seen until almost an hour after my scheduled appointment.

I went in with a set of notes of things I wanted to talk about, mostly questions to ask. My old neuro left town and I hoped this one would maybe shed new light on things but it appears now he was basically just fishing for what had already been prescribed. At first he had me bluffed because he talked very confidently about CH but obviously he doesn't know much about it.

He ended the appointment and said "I have to go" before I had any satisfactory answers to my questions. We asked for the results of a recent CT scan and he made no effort to provide them.

So, no, if I had to guess - he's not open to learning. I don't have a good feeling about this guy. I'd say my best bet is trying to get family practice docs to prescribe what I want them to. The best doc I've worked with yet who knew the most about CH and was most willing to work with me wasn't a neuro he was family practice.

Next time, tell us the important stuff first ! <BG>
=============
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.  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.

Thanks Bob. I just finished reading the articles you posted earlier. I learned that information my old neuro gave me was wrong too. One of the articles said Verapamil should be discontinued after a cycle and resumed at the onset of the next.

I specifically asked that doctor if I had to take Verapamil 365 days a year or just when I was having attack and he said I had to take it year around.

I'm retired military/Tricare so not sure how much flexibility I have choosing doctors that will be covered by insurance. But I'm certainly going to try your route finding the recommended docs and seeing if I can get a refferal. All they can do is say no. And, if they do, the articles you provided will definitely help - someone else suggested the idea of dropping off the reading material at your doc's office a week prior to the appointment so they may have time to look it over before you see them.

There's always options.

Nope. You're not a jerk. I was seeing a neurologist for my epilepsy but we had some time so I asked about CH patiients too. It's been awhile but a couple of times he asked what's the latest from the board? Good for him.

Charlie