Hi there!  My name is Corey, and I am the 41-year old mom of 2.  I got my first migraine in April of 1994 -- I remember it well!  After that, I don't think I got one for about 10 years, and they only came about 4X a year. A shot of Demerol would knock me our for 24 hours; I'd wake up, and it would be gone.  In the past four years, I've been getting headaches that are more frequent and are lasting longer.  They're also acting differently and not responding to meds the same way.  In the past year, I've probably only spent about 100 days pain free, and the majority of those were in the early part of 2010.  Demerol wasn't working.  Stadol shots weren't working.  I knew something was up.

My husband and I have our own automotive performance business, and we happen to have a forum.  I have a section in the forum where I just post about random stuff, and one day a few months ago, I posted about my "migraine" headaches.  One of our customers posted about cluster headaches, and of course, I googled it.  Well, HECK!  If I'm not the poster child for cluster headaches, I don't know who is!  All the kooky symptoms that didn't make sense to me suddenly did!  Droopy left eye.  Feeling like I was being stabbed in the head by a sharpened pencil.  My left nostril being stopped up.  My left eye feeling like it was being stabbed.  My left cheek feeling like it was on fire when the right one was still cool... Whew.  I'm sure you know exactly how I felt.   

My pre-existing was up as of March 1, and I have an appointment with a neurologist on March 22.  Luckily, I have a wonderful g.p. who knows a great deal about cluster headaches, and if I'd been straight with her all along, she probably would have diagnosed me a year ago.  Right now, I have Stadol nose spray for the big attacks.  However, I also have daily migraines, so I'm on hydrocone or oxycodone a lot of the time.  I think that's why I hadn't suffered from the sudden stab-me-in-the-head-with-a-sharpened-pencil attacks... well, I guess, I probably was... it's just that I was medicated, so they weren't as bad.  Boy, I sure can see why they're referred to as suicide headaches.  I, literally, pulled out some of my hair the other night during one attack.  I had run out of Stadol, and I just had to get through it.  Fortunately, mine seem to be about 20 minutes long.

I am currently in Day 40 of this particular round of headaches.  I took hydrocodone a bit ago since I woke with a migraine that's about a 6-7 on a scale of 1-10.  Unfortunately, my left cheek is getting hot, so I know a cluster headache is imminent.

From what I've read, cluster headaches don't have an "aura" like migraines, but I can actually tell when they're coming on.  No, it's not like my migraine aura -- no floaties in my eyes or anything -- but my head doesn't feel "right" and I get REALLY dizzy.  I also get super hypersensitive on the left side of my head, neck, and shoulder (although I've read that's associated with a migraine  ).  Is anyone else able to sense when they're coming on?

Thanks for providing a place where people understand.  I think I'll be hanging out here a lot. 

CH is a frustrating disorder for almost anything you believe to be true will evoke an exception report from someone!

The key is to have a good headache specialist in your camp to sort thru the tangle of symptoms.
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Curr Pain Headache Rep. 2007 Apr;11(2):154-7. 


Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.

PMID: 17367596
=====
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]
=======

Curr Pain Headache Rep. 2001 Feb;5(1):55-9. 


Premonitory symptoms in cluster headache.

Raimondi E.

Catedra de Neurologia, Facultad de Medicina, Universidad Nacional de Rosario, 9 de Julio 3826, Rosario 2002 PKP, Argentina. raimondi@cablenet.com.ar

Cluster headache is one of the most excruciating headaches affecting human beings--especially the male sex. Most of the cluster headache cases are of episodic nature, with active cluster periods lasting generally between a few weeks and 2 or 3 months. A still undetermined percentage of patients report nonpainful sensations preceding the onset of the pain attack for a variable period of time. If occurring only a few minutes or a few hours before the onset of pain, such symptoms are called prodromal. When occurring for several days, weeks, or months before the pain, they are termed premonitory symptoms. The author believes that premonitory symptoms have not been properly diagnosed and emphasizes the need to investigate their presence, because by knowing them advances can be made in the understanding of the physiopathology of this particular cephalalgia. Furthermore, it can also allow the physician to be ahead, by giving preventive treatment and stopping or diminishing the intensity and duration of the pain attacks.

Publication Types:
Review

PMID: 11252138 
====

Such mixtures so features surely makes it difficult for patient and doc--the major argument for having a skilled doc.

Just try and remain flexible in your thinking. With CH, the signs/symptoms can be fluid for some months to years.

Not much to add to what the boys above have said. I'll echo what Lance mentioned, knowledge is your best ally. Follow Bob's lead and find a good headache specilaist neurologist. Then read like crazy on this board and become your own best advocate.

Welcome to the board.

Joe