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Cluster Headache Help and Support >> Getting to Know Ya >> I'm new from VA
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Message started by usuario on Dec 25th, 2011 at 10:23pm

Title: I'm new from VA
Post by usuario on Dec 25th, 2011 at 10:23pm
Hi everyone,

I just found this message board today. I've been getting cluster headaches for about seven years now (since I was 19). I get them once every 12 - 36 hours for about two to three weeks, and I think they're triggered by certain types of grapes and wines. It seems like vasoconstrictor drugs work on me, like Midrin, triptans, or a massive dose of caffeine. I've been pain free for about a month now but I had a scare recently when i had to sip a little wine in a religious setting.

Fancy meeting you all,

Vince

Title: Re: I'm new from VA
Post by Mike NZ on Dec 26th, 2011 at 12:03am
Hi Vince

For most people with CH, alcohol will trigger a CH when they are in the middle of a CH episode, although for some it does not affect them, more commonly with those who are chronic.

Are you taking a preventive? Something like verapamil or lithium? Although for an episode of only two to three weeks you can probably cover this with a prednisione taper dose.

Triptans are good to abort CHs, with injectable imitrex being the most effective as it can kill off a CH in a few minutes.

Have you tried using oxygen at a high flow rate (15lpm+) via a non-rebreather mask. This can kill off a CH quickly too without side effects.

Since caffeine works, have you tried energy drinks, like Red Bull, with both taurine and caffeine. Taken at the start of a CH it can drop the intensity and duration.

Read up, there is a huge amount of info on these forums and ask away with any questions.

Title: Re: I'm new from VA
Post by Bob Johnson on Dec 26th, 2011 at 9:06am
At this early stage there are a couple of essentials: line up a headache specialist, if at all possible. Most doc, even neurologists, have limited, effective education/experience in Cluster.

Knowledge is a major aid to relief and emotional comfort. Explore the buttons, left, starting with OUCH.
---
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. 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE 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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Read, read, read here. You'll find yourself, support, hope.

Welcome.....








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]
====
Consider getting the second title; first if you're really serious <bg>.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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.
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See the PDF file, below. These are the kinds of treatments you should expect to get from any skilled doc.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: I'm new from VA
Post by Guiseppi on Dec 26th, 2011 at 9:16am
You've been given some great advice from Mike and Bob. I'd stress again the importance of locating a headache specialist neuro. GP's and even most garden variety neuros do not have the knowledge base or the experience to recognize and treat CH.

Take a few minutes and read this link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Oxygen should be your primary med to abort CH. The majority of people who try oxygen are succesful at abortiung their attacks. My aborts run 6-8 minutes, that's from onset of symptoms to completely pain free. Cheap, effective, fast, no med side effects, not much to dislike.

Glad you found us, wishing you some peace and pain free time.

Joe

Title: Re: I'm new from VA
Post by Jennifer on Dec 26th, 2011 at 10:17am
Hi Vince.  I see that you're in Charlottesville.  There's a really good neuro in Richmond- Dr. Michael Mareska.  Try one of these #'s:
(804) 288-2742
(804) 730-6988
Even if you can't get to Richmond, he may be able to give you a referral to someone good in your area.

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