Let me start off with full disclosure, in that I have not been diagnosed with cluster headaches.  In fact, I have never been to a neurologist or a headache specialist.  I have only come to believe that I suffer from cluster headaches from research I have done myself. I suffer from all the classic symptoms.  My headaches come and go in cycles.  They have been, without exception, in my right temple/ behind my right eye.  They are relatively short in duration, usually lasting about an hour.  They occur daily while in a cycle. When out of cycle, it is virtually impossible to trigger an attack.  Attacks will include any combination of the following symtoms: Stuffy or runny nose on the affected side, droopy eyelid, cold sweats, inability to remain still for extended periods, frustration and irritability, and general rage and restlessness. Easily 90% of what I've read about these evil things describe my experience as if I wrote it myself.  After years of suffering and not knowing why, I cried like a baby girl the first time I read about cluster headaches and their symptoms. Having said all that, I would like to share my personal story.

My name is Michael, and I am a 29 year old male.  My journey with these headaches is hard to recollect accurately, as I have never kept a headache journal.  It all started in my early twenties, probably at 21.  Initially the pain was manageable, though what I considered at the time to be severe for a headache.  As time passed, the attacks slowly increased in both frequency and severity. Fast forward a few years to around age 25, and I was suffering from full blown chronic attacks.  Everyday, multiple times a day, for about a year and a half straight.  I couldn't hold down a job, I couldn't maintain relationships or friendships, I was scared to even leave the house out of fear of getting the next attack while out.  It had become impossible for me to function in any meaningful way and I had zero quality of life.  Nobody understood, and most people around me would become angry and suggest that I just "suck it up" and get my life together.  I had no idea what was happening to me.  I told myself these were migraines, which several of my family members suffer from, but deep down I knew that wasn't the case.  My experience was completely different from what they would describe.  It was at this time that I went to see a doctor.  I did my best to describe my symptoms, and he prescribed blood pressure medication. -_-  I went back and he prescribed Imitrex, which at around $20 dollars per pill was completely unaffordable.  Then one day, just by chance, my sister read in a health/fitness forum that someone had mentioned that after taking CoQ-10, they found it to relieve their "migraines".  I decided to give it a shot, and it was an absolute miracle.  Within days the frequency and severity began to decline, and after 2 -3 weeks I was completely pain free.  I couldn't trigger one if I tried.  After some time, I began to get shadows and felt they were coming back, so I upped the dosage and sure enough I got relief again. A new cycle starts coming on every 3 - 12 months now, and increasing the dosage seems to break the cycle within weeks, sometimes days.  Along the way I read about Magnesium in relation to migraines, bought some and was able to break my next cycle by adding magnesium supplementation.  I am currently in another cycle, and am up to 800mg of Co-Q10 and 1250mg of magnesium daily.  No relief yet, but keeping my fingers crossed.  So here I am and that's my story.  I realize I'm not asking questions or sharing any advice, but it feels great to get that all off my chest to people who have gone through the same thing.  I can't wait to dive into the forums and learn more about possible treatments and prevention.   

Welcome to the board. Your symptoms sure sound a lot like CH. That being said, I'm copying a post by our resident researcher, Bob Johnson, on cluster like headaches. While you will learn a lot on this board about how to stop pain, it's important you are aware we may be helping you to mask a more serious ailment with our pain killing advice!!!

The concept presented there is:

A headache may appear to be a Cluster but can, in reality, be a medical condition which is far more serious, even life threatening. This suggests that we need a good diagnostic work-up before we assume Cluster and before we start treating the headache as Cluster.

Here are a few abstracts which are case examples of how Cluster-LIKE headaches (the term used in the literature) can be seriously misleading.
================

Cephalalgia. 2010 Jun 8.

Positional CLUSTER-LIKE headache. A case report of a neurovascular compression between the third cervical root and the vertebral artery.
Créac'h C, Duthel R, Barral F, Nuti C, Navez M, Demarquay G, Laurent B, Peyron R.

Université Lyon 1, France.

Abstract
Symptomatic CLUSTER-LIKE HEADACHES have been described with lesions of the trigeminal and parasympathetic systems. Here, we report the case of a 44-year-old woman with continuous auricular pain and a positional cluster-like headache associated with red ear syndrome. Clinical data and morphological investigations raised the hypothesis of a neurovascular compression between the C3 root and vertebral artery. Neurosurgical exploration found a fibrosis surrounding both the C3 root and the vertebral artery. The excellent outcome after microvascular cervical decompression suggests a causal relationship between the cluster-like headache and the vertebral constraint on the C3 root.

PMID: 20974591 [PubMed - as supplied by publisher]
====================================================

Emerg Med J. 2010 Oct 20.

Acute coronary syndromes can be a headache.
Costopoulos C.

Abstract
Ischaemic heart disease is a common cause of morbidity and mortality worldwide. Patients typically present with chest pain and breathlessness either on exertion or at rest. Cardiac ischaemia can also lead to headache, although this is very rarely its only manifestation. Headache is MOSTLY ASSOCIATED WITH MIGRAINE, CLUSTER AND TENSION headache disorders. MORE SINISTER CAUSES INCLUDE SUBARACHNOID HAEMORRHAGE, TEMPORAL ARTERITIS, MENINGITIS, VENOUS SINUS THROMBOSIS AS WELL AS VERTEBRAL AND CAROTID ARTERY DISSECTION. A case of headache is presented where the underlying cause was cardiac ischaemia, itself the result of triple vessel coronary artery disease. This, also referred to as cardiac cephalgia, should be suspected in the older patient with risk factors for atherosclerotic disease presenting with recent-onset headache. Diagnosis of this requires high clinical suspicion and is essential for correct patient management.

PMID: 20961932 [PubMed]
===============================================================================
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Title: "Cluster Headache Mimics"--useful article. Post by Bob_Johnson on Jul 30th, 2004, 2:04pm
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This is an important article to obtain and take to your doctor if you are having a difficult time getting a diagnosis of the type of headache problem you have and/or finding medications which give consistent relief for cluster. It is a technically difficult read for someone not educated in medicine. Its value is in providing case studies about uncommon conditions which appear to be cluster headache but which are, in fact, not.

Broad signs which may signal that the problem being treated is a cluster mimic are: having made a diagnosis of cluster, the standard medications do not work OR they work for an episode or two and then stop being effective. Second, if the diagnostic signs differ in important ways from the standard signs for cluster (and this is a subtle issue which requires a physician with sophistication).

One of the striking findings reported: Cluster can arise from head trauma as long as 30-years after the trauma!

Some conditions which can mimic primary cluster headache:

Infections
     Aspergillus
     Inflammatory disorders
     Wegener's granulomatosis
     Orbital myositis
     Plasmacytoma
     Multiple sclerosis
Head trauma
Vascular abnormalities
     Arterial dissections
     Arteriovenous malformations
Neoplasms
     Pituitary tumors
     Metastases
Other trigeminal autonomic cephalgias: SUNCT syndrome; Paroxysmal hemacrania; Hypnic headache

"Cluster Headache Mimics", Dale M. Carter, M.D.. CURRENT PAIN AND HEADACHE REPORTS, 2004, 8:133-139.
(Take this citation to your public library and they can order a copy of the complete article for you.)
---------------------------------------------------------------

Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.
========

More cases which make it clear that we need caution in diagnosis and more skill than many of our docs possess.
--

Cephalalgia. 2010 May 17.

Mere surgery will not cure cluster headache - implications for neurostimulation.
Hidding U, May A.

University Medical Centre Hamburg Eppendorf, Germany.

Abstract
This case study concerns a patient with primary chronic cluster headache, who was unresponsive to all treatments and consecutively underwent hypothalamic deep brain stimulation (DBS). DBS had no effect on the cluster attacks, but cured an existing polydipsia as well as restlessness. However, hypothalamic DBS produced a constant, dull headache without concomitant symptoms and a high-frequent tremor. All of these effects were repeated when the stimulation was stopped and than started again. DBS had no effect on a pathological weight gain from 70 kg to 150 kg due to bulimia at night, usually during headache attacks.

THIS CASE ILLUSTRATES THAT CLUSTER HEADACHE IS, IN SOME PATIENTS, ONLY ONE SYMPTOM OF A COMPLEX HYPOTHALAMIC SYNDROME.

This case also underlines that the stimulation parameters and anatomical target area for hypothalamic DBS may be too unspecific to do justice to the clinical variety of patients and concomitant symptoms. Hypothalamic DBS is an exquisite and potentially life-saving treatment method in otherwise intractable patients, but needs to be better characterised and should only be considered when other stimulation methods, such as stimulation of the greater occipital nerve, are unsuccessful.

PMID: 20974592 [PubMed
---------

J Neurol. 2010 Oct 26. [Epub ahead of print]

Trigeminal autonomic cephalalgia sine headache.
Haane DY, Koehler PJ, Te Lintelo MP, Peatfield R.

Department of Neurology, Atrium Medical Centre, PO Box 4446, 6401 CX, Heerlen, The Netherlands, ass641@atriummc.nl.

Abstract
Cluster headache without headache (CH-H) has been described several times. We add three new CH-H patients and a patient with (probable) paroxysmal hemicrania without headache (PH-H). We searched the literature and found some more cases of CH-H and PH-H. CH-H attacks may have a shorter minimal attack duration than CH attacks. We propose the term trigeminal autonomic cephalalgia without headache (TAC-H) for autonomic attacks and/or extracephalic pain or sensory symptoms with an attack duration and distribution and/or response to therapy suggesting one of the trigeminal autonomic cephalalgias, but without accompanying headache. Secondary TAC-H may develop after treatment for painful TAC attacks. We discuss pathophysiological issues, particularly the central role of the hypothalamus and the suggestion that the superior salivatory nucleus (SSN) might be triggered by the diencephalic pacemaker without nociceptive activation.

PMID: 20976466 [PubMed

=========

Acta Neurol Scand. 2010 Apr 8.

Secondary chronic cluster headache due to trigeminal nerve root compression.
Mjåset C, Bjørn Russell M.

Head and Neck Research Group, Research Centre, Akershus University Hospital, Lørenskog, Norway.

Abstract
Mjåset C, Bjørn Russell M. Secondary chronic cluster headache due to trigeminal nerve root compression. Acta Neurol Scand: DOI: 10.1111/j.1600-0404.2010.01322.x. (c) 2010 The Authors Journal compilation (c) 2010 Blackwell Munksgaard. A 50-year-old woman had a gradual onset of chronic headache located in the right temporal region and a burning sensation in the root of the tongue which over a year evolved into chronic cluster headache with a milder chronic headache in-between the severe cluster headache attacks. A cerebral magnetic resonance imaging (MRI) showed vascular compression of the trigeminal nerve root on the pain side. Neurosurgery microvascular decompression relieved the patient?s chronic cluster headache, the chronic intermittent headache and the burning tongue sensation. The effect was persistent at a 1 year follow-up. PATIENTS WITH ATYPICAL SYMPTOMS OF CLUSTER HEADACHE SHOULD BE EXAMINED WITH CEREBRAL MRI ANGIOGRAPHY OF ARTERIES AND VEINS TO EXCLUDE SYMPTOMATIC CAUSES.

PMID: 20384588 [PubMed]

=======
Emerg Med J. 2011 Jan;28(1):71-3. Epub 2010 Oct 20.
ACUTE CORONARY SYNDROMES CAN BE A HEADACHE.
Costopoulos C.
SourceDepartment of Medicine, Addenbrooke's Hospital, Cambridge, UK. ccostopoulos@doctors.org.uk

Abstract
Ischaemic heart disease is a common cause of morbidity and mortality worldwide. Patients typically present with chest pain and breathlessness either on exertion or at rest. Cardiac ischaemia can also lead to headache, although this is very rarely its only manifestation. Headache is mostly associated with migraine, cluster and tension headache disorders. More sinister causes include subarachnoid haemorrhage, temporal arteritis, meningitis, venous sinus thrombosis as well as vertebral and carotid artery dissection. A case of headache is presented where the underlying cause was cardiac ischaemia, itself the result of triple vessel coronary artery disease. This, also referred to as cardiac cephalgia, should be suspected in the older patient with risk factors for atherosclerotic disease presenting with recent-onset headache. Diagnosis of this requires high clinical suspicion and is essential for correct patient management.

PMID:20961932[PubMed ====[Added 11/9/11]
BMJ Case Rep. 2008;2008:bcr0720080444. Epub 2008 Nov 20.
Cluster headache or giant cell arteritis?
Baskar S, Etti R, Kitas G, Klocke R.
SourceDudley Group of Hospitals, Rheumatology, Russel's Hall Hospital, Dudley, DY1 2HQ, UK.

Abstract
We describe an elderly female patient with known polymyositis who presented with new onset temporal headache that was diagnosed as giant cell arteritis but subsequently had a typical clinical course of cluster headache. This case illustrates the potential for diagnostic confusion between giant cell arteritis (GCA) and cluster headache (CH) and the need to consider CH as a potential differential diagnosis in those newly presenting with headaches, even in the elderly, and relapsing headaches in subjects with a diagnosis of GCA. Importantly, this needs to include female patients, a group historically thought to be much less likely to develop CH.

PMID:21716821[PubMed]
====
This link will take you to a German source (with mix of German and English titles). These mimics of Cluster are rare, even exotic, but for the intellectually curious it suggests just how many conditions can present as Cluster headaches.

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

======Following posted 3/19/12===

Neurol Sci. 2009 May;30

Headache and multiple sclerosis: clinical and therapeutic correlations.
La Mantia L.
SourceIstituto Nazionale Neurologico C. Besta, Via Celoria, 11, 20133, Milan, Italy. lamantia@istituto-besta.it

Abstract
Headache is not generally considered as a symptom of multiple sclerosis (MS), but several studies have showed that it is more frequent (about 50%) in MS patients than in controls or general population. Headache may occur at onset and during the course of the disease. Tension-type headache and migraine without aura are the most commonly reported primary headaches; occipital neuralgia or cluster-like attacks have also been described, the location of demyelinating lesions (cervical or brain stem) could be strategic in these cases. Furthermore, disease-modifying therapies, such as interferons, may cause or exacerbate headache. These data suggest that MS patients have an increased risk of headache. Preventive therapies may be evaluated in selected patients during chronic treatments to ameliorate compliance.

PMID:19415421[PubMed]
-----------------------------
One value of this report: clue that a headache is not Cluster--when standard CH meds are not effective, in full or in part.
_______________________
J Pain Symptom Manage. 2009 Feb;37(2):271-6.

Chronic cluster-like headache secondary to prolactinoma: uncommon cephalalgia in association with brain tumors.
Benitez-Rosario MA, McDarby G, Doyle R, Fabby C.
SourceUnidad de Cuidados Paliativos, Hospital La Candelaria, Tenerife, Spain. mabenros@gmail.com

Abstract
Headache is a common and disabling aspect of pituitary disease. Chronic and episodic migraine are the most common clinical syndromes of headaches related to pituitary tumors, although other types of headache, such as trigeminal autonomic cephalalgias (TACs), can also be present. TACs include short-lasting, unilateral neuralgiform headache attacks with conjunctival injection and tearing; paroxysmal hemicrania; and cluster headache.

WE REPORT ON A PATIENT WITH A CHRONIC CLUSTER-LIKE HEADACHE ASSOCIATED WITH A MACROPROLACTINOMA. ALTHOUGH CABERGOLINE, PREGABALIN, AND CORTICOSTEROIDS WERE NOT EFFECTIVE AS PREVENTIVE TREATMENTS, HIGH-DOSE VERAPAMIL SHOWED GOOD EFFICACY. MORPHINE AND OCTREOTIDE WERE EFFICACIOUS AS ABORTIVE TREATMENTS FOR ATTACKS, BUT PAIN WAS ONLY PARTIALLY RESPONSIVE TO OXYGEN AND REFRACTORY TO SUBCUTANEOUS SUMATRIPTAN.

PMID:18694630[PubMed]

=====================

Cephalalgia. 2010 Dec;30(12):1509-13.

Positional cluster-like headache. A case report of a neurovascular compression between the third cervical root and the vertebral artery.
Créac'h C, Duthel R, Barral F, Nuti C, Navez M, Demarquay G, Laurent B, Peyron R.
SourceUniversité Lyon 1, France. christelle.creach@univ-st-etienne.fr

Abstract
Symptomatic cluster-like headaches have been described with lesions of the trigeminal and parasympathetic systems. Here, we report the case of a 44-year-old woman with continuous auricular pain and a positional cluster-like headache associated with red ear syndrome. Clinical data and morphological investigations raised the hypothesis of a neurovascular compression between the C3 root and vertebral artery. Neurosurgical exploration found a fibrosis surrounding both the C3 root and the vertebral artery. The excellent outcome after microvascular cervical decompression SUGGESTS A CAUSAL RELATIONSHIP BETWEEN THE CLUSTER-LIKE HEADACHE AND THE VERTEBRAL CONSTRAINT ON THE C3 ROOT.

PMID:20974591[PubMed]
===========================
Neurologist. 2012 Jul;18(4):206-7.
Cluster headache and parietal glioblastoma multiforme. [BJ: group of abnormal growths with varying characteristics.]
Edvardsson B, Persson S.
SourceDepartment of Neurology, Faculty of Medicine, Lund University Hospital, Lund, Sweden.

Abstract
INTRODUCTION: : Cluster headache (CH) is a primary headache by definition not caused by any known underlying structural pathology. However, symptomatic cases have been described. The evaluation of CH is an issue unresolved.

CASE REPORT: : A 41-year-old man presented with a 3-month history of side-locked attacks of excruciating severe stabbing and boring right-sided pain located in the temple and the orbit. The attacks were associated with conjunctival injection and restlessness and migrainous features. The duration of attacks was about 30 minutes and the frequency 4 to 5 per 24 hours. His vital signs and physical and neurological examination were normal. A previous unenhanced brain computed tomography had been normal. A diagnosis of CH was made. The patient responded partially to treatment. Enhanced magnetic resonance imaging after 3 weeks displayed a right-sided parietal glioma with a surrounding edema and mass effect. After debulking, the headache attacks resolved completely.

CONCLUSIONS: : Contrast-enhanced magnetic resonance imaging should always be considered in patients with CH despite earlier normal head computed tomography/examinations. Late-onset CH represents a condition that requires careful evaluation. Parietal glioblastoma multiforme can present as CH.

PMID:22735247[PubMed]
=================================


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

This is a link to how to effectively use oxygen to abort your hits. I average 6-8 minute aborts just huffing pure oxygen.

Then go to the meds section and read the topic "123 pain free days and I think I know why" A simple vitamin and anti-inflammatory supplement which is providing a lot of relief to CH'ers.

Glad you found us, hope we can help you.

Joe

Welcome Micheal. I remember the sigh of relief when I found this support group. My headaches about the same time in my life. I too thought that they were migraines. Then about 5 years they got "really bad". I had taken several trips to the ER, had CT scans and MRI's......all revealing nothing. Just like you, I could barely hold down a job, relationships failed. Nobody would ever believe me when I would tell them how bad these were, or how I would get so many of them during the week. Even my current girlfriend, who has been the most understanding, still can't fathom the pain I would be in from these. Yes it was great when I fould these fellow sufferers. There is a wealth of knowledge here and a lot of your time will be absorbed in reading. I am glad to say that I'm currently in remission as of last week. Hopefully everyone goes into remission for the holidays.

Michael, you really do owe it to yourself to see a headache specialist, not merely for a diagnosis as critical as that is, but also for access to meds that are proven to work. Your current regimen is not generally viewed as effectice in leashing the beast. There are good preventatives and abortives out there but most (except for energy drinks and vitamin D3) require a doctor's care. Glad you're here and looking forward to sharing your journey. blessings. lance

Tim,

Thanks for the kind words and I'm glad to hear you're in remission for the holidays.  As much as I hate for anyone else to go through this, it's still nice to hear from people with similar stories.  It's a difficult thing to be alone in this kind of suffering. 


Guiseppi,

Thanks for taking the time to share.  Your post really opened my eyes to the number of other possible causes, I had no idea.