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Newbie (Read 512 times)
DamnitJanet
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Jul 24th, 2013 at 10:49am
 
Hello  Smiley I am so happy to have found this message board! I live in Lubbock, Texas and began suffering from cluster headaches in my early twenties (back in 1990.) I suffered through them for years thinking they were migraines, taking cafergot. In 1993 I did some research and discovered oxygen therapy and talked a doctor into prescribing it for me. It worked and I was able to break the cluster cycle.
I was cluster free for 21 years until 5 weeks ago. My doctor was so concerned he sent me for an MRI. Nothing more than a 1.2cm maxillary sinus cyst was discovered and I am told that's quite normal. I am currently taking Imitrex, using ice and oxygen when I feel a headache approaching. My headaches generally strike between 8pm and 9am. The new oxygen mask I just received from clusterheads.com is GREAT! I am really hoping I can break this cycle soon.
BTW, my physician is clueless about cluster headaches and is only good for prescribing drugs.
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Bob Johnson
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Re: Newbie
Reply #1 - Jul 24th, 2013 at 1:11pm
 
Last sentence is important. Suspect you have access to a headache specialist and this will be the best route, if at all possible. Remember, you will be living with Cluster for many years so having experience/skill in your camp is nice.
==
LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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You should be using a preventive med so that you don't have to rely on Imitrex as your only control. Print the PDF file, below, both for your learning and to guide you present doc.

A preventive med, Verapamil being the most widely used with a good track record, will reduce/prevent attacks. Then the Imitrex/O2 will be used to knock out any attacks which sneak thru. Current doc will be crazy when he see the dose of this med we use, so if you have a unhelpful response, get back for more mateial to give him.
===
For your learning--and this critical for you long term benefit.
-

Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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]
==
Also,

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
====

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Bob Johnson
 
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wimsey1
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Re: Newbie
Reply #2 - Jul 25th, 2013 at 8:58am
 
You are way ahead of the curve, Janet. Good work. Bob is right and you suspected it anyway. Get a good headache specialist. Work toward an effective preventative: right now, verapamil, sometimes in combo with lithium, is the preferred choice. You might want to add chugging an energy drink (one with taurine like Monster, or Red Bull or others) to your arsenal. We've found doing that at the first sign of a hit, when coupled with O2, brings about a faster and longer lasting abort. Harder to do with nighttime hits, I know, but worth a shot. Also, push for imitrex and possibly Migranal. Trex is faster for me, but Migranal lasts longer. Keep up the good fight and keep us up to date. Blessings. lance
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