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Re: New here... (Read 1814 times)
Bob Johnson
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Re: New here...
Jun 12th, 2012 at 8:27pm
 
You've come aboard with an interesting and rare story!

As you can see from the dates on these abstracts, there is scant literature on the subject.
-------
Curr Pain Headache Rep. 2010 Dec 15.

Cluster Headache with Aura.
Rozen TD.

Geisinger Specialty Clinic, MC 37-31, 1000 East Mountain Drive, Wilkes-Barre, PA, 18711, USA, tdrozmigraine@yahoo.com.

Abstract
Aura was not recognized as a clinical symptom of cluster headache until fairly recently, but studies now have indicated that upwards of 20% of patients with cluster headache may have aura, the same percentage of migraine sufferers who have aura. This paper looks at the epidemiology of cluster headache with aura, suggests possible roles of cortical spreading depression in cluster headache pathogenesis, and looks at the clinical/diagnostic implications of aura in cluster headache sufferers.

PMID: 21161447 [PubMed]
===================

Curr Pain Headache Rep. 2005 Aug;9(4):264-7. 

 
Aura with Non-migraine Headache.

Krymchantowski AV.

Outpatient Headache Unit, Instituto de Neurologia Deolindo Couto, Headache Center of Rio, Rua Siqueira, Campos 43/1002, Copacabana Rio de Janeiro, 22031.070 Brazil. abouchkrym@globo.com.

The typical aura associated with migraine is characterized by visual or sensory and speech symptoms, with a mix of positive and negative features and complete reversibility within 1 hour. However, auras are not an exclusive migraine-dependent phenomenon. There have been descriptions of aura occurring in association with cluster headache, hemicrania continua, and even with chronic paroxysmal hemicrania. In addition, the occurrence of aura without headache or followed by a headache resembling the criteria of tension-type headache is encountered in clinical practice. This paper reviews the literature about auras in non-migraine headaches and the features involving this uncommon presentation. The possibility of a specific genetic origin for the auras, not related to the primary headache type, also is raised.

PMID: 16004842 [PubMed]
=========

Cephalalgia. 2002 Nov;22(9):725-9.   

 
Atypical presentations of cluster headache.

Rozen TD.

Department of Neurology, Cleveland Clinic Foundation, Cleveland, OH 44195, USA. RozenT@ccf.org

Recently, cluster headache has been shown to occur with aura, suggesting that as more cluster patients are seen by headache specialists new forms of this well-defined primary headache syndrome will be identified. This study presents three atypical presentations of cluster headache: persistent or unremitting cluster, periodic cluster, and reflex or event-related cluster. Case reports are presented with an explanation as to why these headaches should be considered cluster headache.

Publication Types:
Case Reports

PMID: 12421158 [PubMed]
============================

Curr Pain Headache Rep. 2001 Feb;5(1):67-70.   

 
Migrainous features in cluster headache.

Peatfield R.

Charing Cross Hospital, Fulham Palace Road, London W6 8RF, UK. rpeatfield@ic.ac.uk

Migraine and cluster headache have been considered entirely separate clinical syndromes, both in routine clinical practice and in the 1988 International Headache Society classification. Neurologists seeing large numbers of patients soon realize, however, that there is a considerable overlap between the two conditions. Some patients have attacks with the cardinal features of cluster headache, but also have a few symptoms (especially a visual aura) usually attributed to migraine. In addition, it is not uncommon for a patient with a lifetime's history of migraine to experience a typical bout of cluster headache, although the reverse is less common. This article reviews the published series of such patients.

Publication Types:
Review

PMID: 11252140 [PubMed]
====

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« Last Edit: Jun 12th, 2012 at 8:30pm by Bob Johnson »  

Bob Johnson
 
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Re: New here...
Reply #1 - Jun 12th, 2012 at 10:11pm
 
Welcome to the board. Sadly, we've found nothing that works for everybody. There are several high percentage treatments that help a LOT of people. Read this link to make sure you were using the oxygen correctly. Slight changes in HOW the oxygen is used can dramatically affect the abort speed and effectiveness:

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

Then go to the meds section and read the post "123 pain free days and I think I know why" It's a simple daily anti inflammatory supplement that's providing a lot of relief to CH'ers. Cheap, healthy for you even without CH, helping a lot of people, worth a shot!

Finally, visit our sister site:

Clusterbusters.com

They look at alternative treatments outside of mainstream medicine. A lot of people find relief here when nothing else worked.

Hoping you catch a short cycle this go round.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New here...
Reply #2 - Jun 13th, 2012 at 2:32am
 
Welcome to the forums, I hope you learn something here that will help.

Joe's post has some excellent advice that could help, especially around how we now use oxygen and vitamin D.
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New here...
Reply #3 - Jun 13th, 2012 at 8:47am
 
With such a history of failure of the conventional treatments, need to consider that you don't have Cluster.

Literature is just starting to grow about "cluster-LIKE" headaches, i.e., a bizarre range of disorders which mimic Cluster but which are not headache disorders. Some of these disorders are rather seriuous, therefore, important to get a broad diagnostic work-up done. And, implies working with a doc who has some awareness of this issue.

See: 
Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

====================
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. 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.

5. 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.

6. 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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« Last Edit: Jun 13th, 2012 at 8:49am by Bob Johnson »  

Bob Johnson
 
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Re: New here...
Reply #4 - Jun 13th, 2012 at 9:05am
 
I'm not willing yet to agree that past treatments have failed, since we have no idea what dose levels were. Often we find a Rx "tried" and abandoned without ever approaching the level we require as clusterheads. For example, Verapamil. Label use has it around 240mg/day, but it doesn't become effective for us (usually) until we reach a range of 360-960mg/day. Same with O2. We find it was tried, but at maybe 6lpm, with a canula or rebreather mask. We do best at 25lpm+ with a nonrebreather mask.  This same principle seems to hold for most of the usual preventatives and abortives. Pills are too slow; nasal sprays better, and injections best. Of course, if you already can say you were at dose levels I've described, then Bob is right, you may not have clusters. Get back to us about this, OK? Blessings. lance
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AppleNutClusters
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Re: New here...
Reply #5 - Jun 15th, 2012 at 4:56pm
 
Am I missing something here?  Where's the original post?  Now I'm curious... Smiley
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jgroulx@mac.com  
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New here...
Reply #6 - Jun 15th, 2012 at 5:39pm
 
AppleNutClusters wrote on Jun 15th, 2012 at 4:56pm:
Am I missing something here?  Where's the original post?  Now I'm curious... Smiley


Sometimes people delete their posts, which is possibly what happened here.
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